tag:blogger.com,1999:blog-14039272905291321932024-03-05T07:47:06.416-05:00Maddie's MissionExperiences of a family along the journey of Pompe Disease.Unknownnoreply@blogger.comBlogger93125tag:blogger.com,1999:blog-1403927290529132193.post-981721286931262642018-10-22T19:37:00.001-04:002018-10-22T19:37:57.267-04:00Learning To Fly<br />
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<i><span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">Well, I started out down a dirty road</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">
Started out all alone<br />
And the sun went down as I crossed the hill<br />
And the town lit up and the world got still<o:p></o:p></span></i></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">I'm learning to fly, but I ain't got wings<br />
Coming down is the hardest thing<o:p></o:p></span></i></div>
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<span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">It’s hard to believe
that five years has passed since our last post in October 2013.<span style="mso-spacerun: yes;"> </span>In </span><a href="https://maddiesmission.blogspot.com/2013/10/what-wonderful-world.html"><span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">https://maddiesmission.blogspot.com/2013/10/what-wonderful-world.html</span></a><span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">, we shared a video
interview highlighting the girls’ lives and next steps.<span style="mso-spacerun: yes;"> </span>Emma was getting ready to head off to college
and Maddie was preparing to be a high school freshman. About the same time, we
took the decision to put the blog on hold so the girls could be who they wanted
to be without a blog reminding them of the challenges they face.<span style="mso-spacerun: yes;"> </span>Now that some time has passed, we have
decided to return to sharing stories about our lives.<span style="mso-spacerun: yes;"> </span>So, in honor of <span style="background: white;">Disability
Awareness Month, we wanted to offer a summary of what we have been up to </span>over
the past few years.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">Emma attended Ursinus College
in Pennsylvania and graduated with a double major in Biology and International
Relations.<span style="mso-spacerun: yes;"> </span>During her time in college,
she attended multiple Model UN programs in New York City and pursued her
interest in genetics.<span style="mso-spacerun: yes;"> </span>After graduating,
she took a Patient Advocacy role at the UF Powell Center for Rare Disease
Research and Therapy.<span style="mso-spacerun: yes;"> </span>At the same time,
she began a six-month physical therapy research study which helped her develop
a focused exercise program, gaining strength along the way.<span style="mso-spacerun: yes;"> </span>Most recently, Emma returned to student life
by deciding to take on the MPH (Masters, Public Health) program at University
of Florida.<span style="mso-spacerun: yes;"> </span>Her focus is on global
health while continuing her work at the Powell Center.<span style="mso-spacerun: yes;"> </span>The future is bright for Emma with the coming
years laying the groundwork for her future.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">Maddie finished high
school in Pennsylvania and, after completing a detailed college search, decided
to attend the University of Florida.<span style="mso-spacerun: yes;"> </span>She
is now a sophomore pursuing a major in Communication Science with minor in
Disabilities in Society.<span style="mso-spacerun: yes;"> </span>On top of her
major, Maddie has continued her love of music and singing by joining No
Southern Accent, UF’s premier A Cappella group.<span style="mso-spacerun: yes;">
</span>This has taken her to different competitions, recording opportunities,
and soon to be posted songs to Spotify and iTunes.<span style="mso-spacerun: yes;"> </span>At the same time, Maddie has continued her
calling to help others with disabilities live their best life and achieve their
goals.<span style="mso-spacerun: yes;"> </span>Last year she began work with
UF’s Disability Resource Center as an Educational Assistant where she supported
students with their classes.<span style="mso-spacerun: yes;"> </span>This year,
she is the Assistant Director of Disability Affairs for the UF student
government.<span style="mso-spacerun: yes;"> </span>In addition, she has
volunteered at Camp Boggy Creek, a camp supporting children with various
diseases and disabilities.<span style="mso-spacerun: yes;"> </span>Maddie
continues to pursue her interests and we look forward to seeing where they will
take her.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">The rest of our family
has been quite active as well.<span style="mso-spacerun: yes;"> </span>Our son, Carter,
is continuing his degree in Kinesiology and Exercise Science at Temple
University and is a cadet within Temple’s Army ROTC program.<span style="mso-spacerun: yes;"> </span>He has fully embraced his commitment of
service to our country. <span style="mso-spacerun: yes;"> </span>This has
included graduation from U.S. Army Air Assault School, Captain of Temple’s
first ever Ranger Challenge Team victory, and participation in the Sandhurst International
Military Competition at West Point.<span style="mso-spacerun: yes;"> </span>He
will graduate from Temple and will commission as a second lieutenant in the U.S.
Army in Spring 2019, beginning his active duty commitment.<span style="mso-spacerun: yes;"> </span>We look forward to learning where he will be
stationed and are incredibly proud of all he has and will achieve. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">Mom and Dad are doing
well.<span style="mso-spacerun: yes;"> </span>We continue to be humbled by the
growth of our children as they pursue their passions.<span style="mso-spacerun: yes;"> </span>Looking back over the past five years, it
hasn’t been all perfect.<span style="mso-spacerun: yes;"> </span>The challenges
with Pompe continue and we have lost several loved ones including my mother and
both of Donna’s parents.<span style="mso-spacerun: yes;"> </span>Overall, we
have remained optimistic about medical innovation and focused on the good
things that life has blessed us with.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">The most important thing,
despite it all, our family is looking forward to a bright future and along the
way are… <o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">Learning to Fly!<o:p></o:p></span></i></div>
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<br /></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">Learning to Fly</span></i><span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">; Tom Petty and Jeff Lynne<o:p></o:p></span></div>
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<br /></div>
<div class="verse" style="margin-bottom: .0001pt; margin: 0in; vertical-align: baseline;">
<span style="font-family: "Arial",sans-serif; font-size: 11.0pt;">PS: If you didn’t know,
Tom Petty is from Gainesville, FL (home of UF).<span style="mso-spacerun: yes;">
</span>Go Gators!<o:p></o:p></span></div>
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<span style="font-family: "Arial",sans-serif; font-size: 11.0pt;"><br /></span></div>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1403927290529132193.post-53266938127261416202013-10-08T21:22:00.000-04:002013-10-08T22:16:00.434-04:00What A Wonderful World<div>
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<br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I see trees of green, red roses too</i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I see them bloom for me and you</i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>And I think to myself, what a wonderful world</i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I see skies so blue and clouds of white</i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>The bright blessed day, the dark sacred night</i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>And I think to myself, what a wonderful world</i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In September 2010 I posted an update titled </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Heroes </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">where I highlighted Emma's recognition of some amazing people she met early in her Pompe adventure. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">(See </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><a href="http://maddiesmission.blogspot.com/2010/09/heroes.html">maddiesmission.blogspot.com/heroes</a></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">) </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Since that time we have met many others from doctors, to researchers, and fellow Pompe travelers. I could probably write post after post about their importance, but today I will focus on just one. Today I'd like to mention someone who continues to use his skills to give a voice to those who are sometimes forgotten. By doing so, he has left a lasting impression on me. And, by doing so, he has reminded the Crowleys that despite hardship and challenge, we truly live in a wonderful world. </span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If you live in the Philadelphia area, you may already know Steve Highsmith as that newscaster on the local NBC affiliate PHL17 or as the guy who has hosted the Mummers Parade for over 20 years. For those outside the area, I assure you he is that and so much more. He is heavily involved in the community through all types of charity activities and has received high honors from his peers. It is his passion for children with m</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">uscular dystrophy that brought us together and keeps us crossing paths. That passion has driven him to donate his time at various events, be a regular at MDA summer camp, and lead the </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">live showing of the Muscular Dystrophy Association (MDA) Annual fundraiser.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We were first introduced to Steve three years ago when we were invited down to the TV station to meet some sponsors, other families, and TV personalities. At our introduction we were struck by this man who spoke so strongly about the mission of the MDA and what it meant for the Philadelphia area. He made us all welcome and was nice enough to allow Maddie backstage while they filmed. Not surprisingly, Maddie wasted no time finding her way on TV with some other kids, </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">answering questions and laughing away. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We ran into Steve a few more times at different MDA events and exchanged emails. Last year Donna and Maddie were invited down to the station for his one hour public affairs show to speak about their experiences with Pompe. Last summer Maddie and Emma were interviewed at MDA camp and a few months ago they were called again. This time Donna and the girls shared the stage with their good friends Liam and his mother Susan to discuss different perspectives on life with muscular dystrophy. As expected, through it all, Steve kept it positive, supportive and inspiring.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Rather than share all the details from the interview, Steve was kind enough to let me share the 30 minute video here. When you have some time to set aside I hope you check it out. I must admit it is still a bit strange to watch my family on TV especially when they are sharing their challenge with such hope, laughter, and determination. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I hope you find the interview interesting, but most of all I hope you realize that while Steve could easily spend his time focusing on more popular subjects, he chooses to give a voice to kids and families with unique perspectives to share. For this I applaud him.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Steve, thanks for all you do. Thanks for using your talents to spread the word about muscular dystrophy, for volunteering for so many good causes in the Philly area, and for reminding our family that there are many, many heroes in our crazy world. We are lucky to call this one, friend.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Because of you...</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I think to myself, what a wonderful world</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Yes, I think to myself, what a wonderful world</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to Louis Armstrong, "What A Wonderful World"</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Please see the video below. In case you have trouble viewing it on this site, you can also access it via <a href="http://www.youtube.com/watch?v=clBjcvbSQUc">YouTube</a>.</span></div>
</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1403927290529132193.post-56426570708198846042013-09-25T16:26:00.000-04:002013-09-25T16:26:26.266-04:00Centerfield<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">Well, a-beat the drum and
hold the phone</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">The sun came out today</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">We're born again, there's new
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">A-roundin' third and headed
for home</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">It's a brown-eyed handsome
man</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">Anyone can understand the way
I feel</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">Oh, put me in coach, I'm
ready to play today</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<i><span style="font-family: Verdana;">Put me in coach, I'm ready to
play today</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<i><span style="font-family: Verdana;">Look at me, I can be
centerfield</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana;">This past summer our local
Little League boys went for quite a run, winning the state championship,
landing on ESPN, and coming up just shy of heading to the Little World Series.
It was great to see boys that we've known for years mature into a special
moment that they will remember for the rest of their lives. As I sat and
watched the games I thought back to another championship that may not have
gained the fame of this year’s team, but sure brought a bit of excitement to
our house.</span><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<span style="font-family: Verdana;">The 2009 girls’ softball
season arrived right on time. The cool of winter was behind us and spring
was in full bloom.<span style="mso-spacerun: yes;"> </span>It was the
perfect time to head to the field.<span style="mso-spacerun: yes;">
</span>That season started out the same as others before with no indication
that it might be special.<span style="mso-spacerun: yes;"> </span>All
interested girls went through hitting and fielding exercises to organize their
skills, the coaches met over pizza to draft teams, and practice began.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana;">Over the years, Maddie had
played various sports from soccer to basketball, but softball was her favorite.
Perhaps it was a love of the game, time outside with her friends, or
because her coaches (Donna and our good friend) focused on fundamentals with
plenty of laughs on the side. I am not sure.<span style="mso-spacerun: yes;"> </span>All I know is Maddie enjoyed playing pitcher, to catcher, to
second base, and centerfield.</span><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<span style="font-family: Verdana;">Before the first game I was
asked to help out the team.<span style="mso-spacerun: yes;"> </span></span><span style="font-family: Verdana;">Maybe I was chosen because I used to score
baseball games as a kid or maybe because I didn't mind carrying the coach's
clipboard. Either way, after a complete review of all the other
candidates (there were none), I was given the unofficial title of Scorekeeper.
My job was to list the teams' lineups, keep track of the game, make sure the
girls were ready to bat, and verify the score with the umpire.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: Verdana;">While this may sound like
stressful work to some, I did receive fringe benefits. Because my official
duties required me to be in the dugout, I was able to pass on my secrets to
hitting, fielding, and sneaking pieces of the post game snack when the game got
a little slow.<span style="mso-spacerun: yes;"> </span>I was also schooled
in the ways of the softball cheer. For some reason, when you get a group of
girls in a dugout they have to sing things like "to the green 13, to the
green 13", "hey you on two, wiggle, wiggle, wiggle", or "we
want a single just a little single, we want a double just a little
double...".<span style="mso-spacerun: yes;"> </span>I didn't recall
that from baseball, but found myself quietly cheering alongside.<span style="mso-spacerun: yes;"> </span>Sorry, they are catchy!</span><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<span style="font-family: Verdana;">We started out the season
with a win, then another, then another. There were struggles and there were
successes, but from my dugout view I quickly realized we had something special.
We had more than just a group of girls. We had a team.<span style="mso-spacerun: yes;"> </span>In game after game, different girls
stepped up for that timely hit or to turn that rare double play.<span style="mso-spacerun: yes;"> </span>Before we knew it they finished the
regular season undefeated and were headed to the playoffs.<span style="mso-spacerun: yes;"> </span>Game after game they took the field
with a confidence I did not see at the beginning of the season and won out. In the
end, they were the recreational league champs. </span><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<span style="font-family: Verdana;">A few things have changed
since the summer of 2009. Some girls, like Maddie, played one more season of
softball, trying to regain the magic of 2009, but it wasn’t there.<span style="mso-spacerun: yes;"> </span>Other teams hit their stride and took
the league by storm.<span style="mso-spacerun: yes;"> </span>Maddie
decided to stop after a realization that her skills no longer matched those of
the stronger girls heading into travel softball.<span style="mso-spacerun: yes;"> </span>She enjoyed every minute of the rec. league game and was not
ready to commit to the next stage.<span style="mso-spacerun: yes;">
</span>For her, the timing was right as she had discovered her love for acting
and singing and wanted to dedicate her free time to that. Some of the
other girls transitioned into gymnastics and lacrosse while others continued
with softball and are playing for the high school team today. </span><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<span style="font-family: Verdana;">As we all do, I remember certain
special moments from my childhood, which brought me happiness.<span style="mso-spacerun: yes;"> </span>Depending on situation, I remember a
lot of details or just a moment in time. <span style="mso-spacerun: yes;"> </span>Looking back, these didn’t seem to be significant at the
time.<span style="mso-spacerun: yes;"> </span>They were just regular days
where something special occurred.<span style="mso-spacerun: yes;"> </span>As
a father, I watch our kids and wonder what they will recall when age 30 becomes
age 40. Maybe it will be a family vacation, laughs around the school lunch
table, or success on a sports field.<span style="mso-spacerun: yes;">
</span>It’s impossible to tell which moments of their childhood they will
remember fondly, but I hope there are many.</span><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<span style="font-family: Verdana;">I'm not sure if 2009’s
softball season will make the list of the many wonders that Maddie will
experience in her life, but I hope so because its made mine. If by chance it
does, I hope to be by her side when she looks at me, recalls the story and says
"remember when…".<span style="mso-spacerun: yes;"> </span>With
any luck, we will laugh about the cheers, smile about the wins, and remember
the days when I stood by, clipboard in hand, and overheard a little girl
say... </span><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<i><span style="font-family: Verdana;">Oh, put me in coach, I'm
ready to play today</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<i><span style="font-family: Verdana;">Put me in coach, I'm ready to
play today</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<i><span style="font-family: Verdana;">Look at me, gotta be,
centerfield</span></i><span style="font-family: Verdana;"><o:p></o:p></span></div>
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<span style="font-family: Verdana;">Credit to: John Fogerty,
"Centerfield"<o:p></o:p></span></div>
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<span style="font-family: Verdana;">Here are a few photos from
the season: <span class="Apple-style-span" style="font-size: 10pt;"><o:p></o:p></span></span><br />
<span style="font-family: Verdana;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuO_cMOhhjRI_0F3UBILMq3hqyTcXnEwylM20FrjJOkFC-CWM2PdckeGxDcWi7KPs5fxe6frKHZX0ZgF6BaF3mcHTh8kHbM7iiR6e9H_5E-65b9CfYhwv9tBbLqzJyfs72vSybqKrNXHk/s1600/IMG_4753.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuO_cMOhhjRI_0F3UBILMq3hqyTcXnEwylM20FrjJOkFC-CWM2PdckeGxDcWi7KPs5fxe6frKHZX0ZgF6BaF3mcHTh8kHbM7iiR6e9H_5E-65b9CfYhwv9tBbLqzJyfs72vSybqKrNXHk/s640/IMG_4753.jpg" width="426" /></a></div>
<div style="text-align: center;">
Staring down the batter and prepping for strike 3 </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsKsdnwj63ALqbSDOZEEbWcQaEPBr4p56Has9y6L4JmAKLQXn7mzZ4ZwXxbVdOWMY3a9Go5-T6QpoK6QvxBB7X25rtXJyY5y0zBZqMroOn3hJm-3hyCOBKpdx85rI5BWCgdKKA_uBqg3Q/s1600/IMG_4761.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsKsdnwj63ALqbSDOZEEbWcQaEPBr4p56Has9y6L4JmAKLQXn7mzZ4ZwXxbVdOWMY3a9Go5-T6QpoK6QvxBB7X25rtXJyY5y0zBZqMroOn3hJm-3hyCOBKpdx85rI5BWCgdKKA_uBqg3Q/s640/IMG_4761.jpg" width="426" /></a></div>
<div style="text-align: center;">
The slugger's stance</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ6kOODSzjCiudzhKhLe9wad6HMULiLVIxNjz7gPpLsx9MPUJAyEAMT3klT6-mrENqi8HO4Rhcxa1r5Ew2X3Fnv5PmfxNJgOOA-txZT51KpPZL_gbU9l5DXtAXVkXn5mnpx3z3WaA5wIU/s1600/IMG_4797.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ6kOODSzjCiudzhKhLe9wad6HMULiLVIxNjz7gPpLsx9MPUJAyEAMT3klT6-mrENqi8HO4Rhcxa1r5Ew2X3Fnv5PmfxNJgOOA-txZT51KpPZL_gbU9l5DXtAXVkXn5mnpx3z3WaA5wIU/s640/IMG_4797.jpg" width="425" /></a></div>
<div style="text-align: center;">
Hammin' it up in the dugout </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXLWyEdonozWc85q_IXbStTDXH_kp_7VjKuAYrM-hEKY-RFSDiMfnR3ycIvAzVoxbaUNL1WuBUw_6uSgQjQjewuAOf9EAkrypAa5kKGTT3s7a4huom_6kIvTJGRIJHQhbC_BdyF1LcvW8/s1600/IMG_4800.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXLWyEdonozWc85q_IXbStTDXH_kp_7VjKuAYrM-hEKY-RFSDiMfnR3ycIvAzVoxbaUNL1WuBUw_6uSgQjQjewuAOf9EAkrypAa5kKGTT3s7a4huom_6kIvTJGRIJHQhbC_BdyF1LcvW8/s640/IMG_4800.jpg" width="425" /></a></div>
<div style="text-align: center;">
One happy catcher! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSv6tHQgJEZHlm1mgvkkPkzCbx6bLocdDWtUlQT09wY0c9K8kHzblYXwkSoCCPOivxuPMs-NA2pTU_3I0b_bFyXk_3Yxe8A-bLZMf0CKOW2JnIX0v0D0cI8UqRn2djY6t0q3uqctlYYes/s1600/IMG_4811_2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="412" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSv6tHQgJEZHlm1mgvkkPkzCbx6bLocdDWtUlQT09wY0c9K8kHzblYXwkSoCCPOivxuPMs-NA2pTU_3I0b_bFyXk_3Yxe8A-bLZMf0CKOW2JnIX0v0D0cI8UqRn2djY6t0q3uqctlYYes/s640/IMG_4811_2.jpg" width="640" /></a></div>
<div style="text-align: center;">
<span style="font-family: Verdana;">The 2009 Champs!</span></div>
</div>
<!--EndFragment-->Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1403927290529132193.post-9436849868757590492013-09-04T18:08:00.002-04:002013-09-04T18:08:23.832-04:00Sail on Silver Girl<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>When you're weary</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Feeling small</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>When tears are in your eyes</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I will dry them all</i></span></span><br />
<i><span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I'm on your side</span></span></i><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>When times get rough</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>And friends just can't be found</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Like a bridge over troubled water</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I will lay me down</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Like a bridge over troubled water</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I will lay me down</i></span></span><br />
<span style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #333333;"><br /></span><span class="Apple-style-span" style="color: #333333;"><span class="Apple-style-span" style="line-height: 17px;">Some posts come to me in a flash. I hear a song or think of a recent event and they are there just waiting to be written. Very few are thought out and planned far in advance. This is the latter. I saw this one coming far before I began to write a blog or we knew anything about Pompe. I saw it coming the first time I watched her walk away. The strange thing is I encouraged her to do this twice. </span></span><span style="color: #333333; line-height: 17px;">Both times I made a promise to always be there for her. The difference this time is she's not coming home for an afternoon snack and a nap.</span><span style="color: #333333; line-height: 17px;"> </span><span style="color: #333333; line-height: 17px;">The first time was elementary school. This time it's college.</span></span><br />
<span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 17px;"><br /></span></span><span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 17px;">During Emma's graduation party, a good friend of mine told me he realized some time ago that he was living on borrowed time with his kids. From elementary school to middle school and high school, the years went so slow, but yet moved so fast. He recognized that any extra time he could spend with them while they were still home was a gift. Sure, they'd always be in his life, but never the same way as when they are young. As I listened, I realized I had never thought about it that way, but he was absolutely right. As I watched my daughter circulate across the party that night, laughing with her friends and greeting guests, I was hit with the realization that my time with her home was almost up. </span></span><br />
<span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 17px;"><br /></span></span>
<span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 17px;">For those of you who have not gone through it, preparing a child for college is an adventure. During the summer before junior year of high school and throughout the following 12+ months, you find yourself knee deep in college tours, reading about </span></span><span style="color: #333333; font-family: Verdana, sans-serif;"><span style="line-height: 17px;">scholarships, talking about SATs, and encouraging your child to consider what they want to be when they "grow up". It is a very important yet strange time. You are asking them to think about where they want to live, what size school they want to attend, what they want to major in, and who they want to be. It's a lot a pressure for someone you just recently were worried about handing the car keys to. This wasn't a drive to a friend's house. This is big time grown up stuff.</span></span><br />
<span style="color: #333333; font-family: Verdana, sans-serif;"><span style="line-height: 17px;"><br /></span></span>
<span style="color: #333333; font-family: Verdana, sans-serif;"><span style="line-height: 17px;">We approached the process using the advice of someone I heard speak a few years ago. He was a college coach who told the prospective players to use the "broken leg" concept if they were lucky enough to obtain an athletic scholarship. By sharing examples of athletes he coached in the past his message was simple. When choosing a college, consider what you want out of it, not just who appears to have the best team because if you broke your leg and couldn't play, would you still want to be there? So, if you thrive in large groups, choose a big college , but if you learn better in more intimate environments, choose a smaller school. If you love the cold days of winter, move North, but if you want to be warm in February, move South. In short, pick a college that suits who you are and you will set yourself up to succeed. </span></span><br />
<span style="color: #333333; font-family: Verdana, sans-serif;"><span style="line-height: 17px;"><br /></span></span>
<span style="font-family: Verdana, sans-serif;"><span style="color: #333333;"><span style="line-height: 17px;">During our first college visit we quickly realized that a small school was the right thing for Emma. </span></span><span style="color: #333333; line-height: 17px;">As I walked from one side of the campus to the other listening to the tour guide and thinking about how cool it would be to go to college again, I was reminded again and again to slow down. I like to say it was due to my long athletic strides, but my lovely children tell me it's nervous energy. Either way, I walk fast and my Pompe girls don't. Not only do they not walk fast, they need to take frequent breaks after walking too far. So, the idea of walking 30 minutes from one side of the campus to another for classes or visits to the dorm would not work. Large schools out, small schools in.</span></span><br />
<span style="color: #333333; line-height: 17px;"><span style="font-family: Verdana, sans-serif;"><br /></span></span>
<span style="color: #333333; font-family: Verdana, sans-serif;"><span style="line-height: 17px;">Fortunately there are many, many small schools within 2-3 hours from our home. In fact, there are so many it was tough to limit the choices. However, being the logical one in the family, Emma defined her criteria, scheduled tours for the handful she really wanted to see, and chose representative schools for the others. It worked out well. By the end of the process the applications were sent in and we waited. Halfway through the process she had to make a decision none of us thought of. If she went more than a two hour drive from our home, our home infusion nurse might not be able to continue with her. His schedule is quite tight and servicing patients far outside the regular route would just not work. We weighed the options of other nursing services or infusion centers, but she shot this down. She and her nurse are close and changing this on top of all the standard changes that come with college would just be too much. That settled it. She would choose a small school within a reasonable distance from home, but still live on campus. It was the best of both worlds. Fortunately, she was accepted by her first choice and it all fell into place perfectly.</span></span><br />
<span style="color: #333333; font-family: Verdana, sans-serif;"><span style="line-height: 17px;"><br /></span></span>
<span style="font-family: Verdana, sans-serif;"><span style="color: #333333;"><span style="line-height: 17px;">Months past by before she was to graduate high school and the realization of our first child off to college truly hit us. Sure, we took the tours, filled out the papers, and talked about it over and over again, but suddenly it was really here. The planning went into full steam with Donna and Emma hitting store after store for dorm supplies and the three of us attending orientation seminars. All the while I tried my best to spend a little more time with her each and every week. Hour after hour we would talk, laugh, and I would out-stay my welcome as she needed to complete her homework or see her friends who too were soon off to college. </span></span><span style="color: #333333; line-height: 17px;">Like my friend would clarify weeks later, I was on borrowed time and I didn't like it.</span></span><br />
<span style="color: #333333; line-height: 17px;"><span style="font-family: Verdana, sans-serif;"><br /></span></span>
<span style="font-family: Verdana, sans-serif;"><span style="color: #333333; line-height: 17px;">As I sat in her room those nights talking about life and laughing, I couldn't help but think about those first few months with Emma. </span><span style="color: #333333; line-height: 17px;">We were in our mid 20's with very little to call our own, but it didn't matter.</span><span style="color: #333333; line-height: 17px;"> </span><span style="color: #333333;"><span style="line-height: 17px;">Life with daddy's first little girl was magical. Every morning there was a smile to greet you and every night a baby rocking away to sleep. Day by day she learned to sit up, then to crawl, then to talk, and then to walk. Every morning and every night she held our hand and allowed us to learn how to be parents and mature as adults. It was a wonderful time. Our wish was that one day she would be strong woman, a smart lady, and most importantly a good person. Little did we know how fortunate we would become. </span></span><span style="color: #333333; line-height: 17px;"> </span></span><br />
<span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 17px;"><br /></span></span><span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 17px;">Move in day arrived on the calendar and off we went. We had to take two cars for all the supplies so Donna drove with Emma and I with Maddie. After checking in, finishing the dorm move-in, exchanging hugs, and a final bit of advice, I did something I had been dreading for years. I drove away alone. I wasn't sure how I'd feel, but was positive I would break down, but didn't. I thought for sure I would be sad, but I wasn't. No matter how much sadness started to enter my mind, I stopped because she was so very happy. She had been waiting for this day for so long and was finally on her way. Today was about her and it was perfect. </span></span><br />
<span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 17px;"><br /></span></span>
<span style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #333333;"><span class="Apple-style-span" style="line-height: 17px;">On my drive home I didn't listen to music, I just thought about the day and the so many days that lead up to it. Doing so, I realized we did good. </span></span><span style="color: #333333; line-height: 17px;">Our wish was that one day she would be </span><span style="color: #333333; line-height: 17px;">strong woman, a smart lady, and a good person.</span><span style="color: #333333; line-height: 17px;"> She is that and so much more. The courage she shows in her daily fight continues to be my inspiration and I have no doubt grand things are waiting for her</span><span style="color: #333333; line-height: 17px;">. It is her time to excel far beyond what I could ever imagine. It is her time to shine.</span></span><br />
<span class="Apple-style-span" style="color: #333333;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><span class="Apple-style-span" style="color: #333333; font-family: Verdana, sans-serif; line-height: 17px;">So in the end, I know three things for certain. First, I cannot be prouder of who our daughter has become. Second, I will miss her something crazy. Third, my message to her is quite simple and is stated by a couple of my favorite songwriters much better than I ever could...</span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Sail on Silver Girl</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Sail on by</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Your time has come to shine</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>All your dreams are on their way</i></span></span><br />
<i><span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">See how they shine</span></span></i><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>If you need a friend</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I'm sailing right behind</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Like a bridge over troubled water</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I will ease your mind</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Like a bridge over troubled water</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I will ease your mind</i></span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: Simon and Garfunkel, "Bridge Over Troubled Water"</span></span><br />
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span>
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span>
<span class="Apple-style-span" style="color: #333333; line-height: 17px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few photos along the way:</span></span><br />
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<span class="Apple-style-span" style="color: #333333;">She's here, overjoyed!</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9AkcPTpSpUjiAQHuvuugvY07FrGxw5LPcVlmNPbE5a8GWhZSqbK-hmTwlTDMAkMqLqHm5n7U4yGzSdCuEugl8QBJjPa2FJXBvVKkYYRM8e_fP56j5GGgYugvJX-LNGdw-iX-awFNRPvs/s1600/Emma+and+Dad+Disneyland.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9AkcPTpSpUjiAQHuvuugvY07FrGxw5LPcVlmNPbE5a8GWhZSqbK-hmTwlTDMAkMqLqHm5n7U4yGzSdCuEugl8QBJjPa2FJXBvVKkYYRM8e_fP56j5GGgYugvJX-LNGdw-iX-awFNRPvs/s640/Emma+and+Dad+Disneyland.jpeg" width="432" /></a></div>
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Special times at Disneyland</div>
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Proud of my girl<br />
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Summer 2013 - France</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1403927290529132193.post-40562734018892431342013-08-15T19:30:00.000-04:002013-09-04T20:23:52.029-04:00When You Wish Upon A Star<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When you wish upon a star</span></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Makes no difference who you are</span></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Anything your heart desires</span></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Will come to you</span></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span></i>
<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If your heart is in your dream</span></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">No request is too extreme</span></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When you wish upon a star</span></span></i><br />
<i style="mso-bidi-font-style: normal;"><span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As dreamers do</span></span></i><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When the idea was first presented to her, she quickly dismissed it. She said she could not accept as there were others much more deserving than her. Over time we kept the idea alive through the occasional reminder and dinner table discussion, but the door remained closed. That was until one special night when magic happened and she accepted to wish upon a star.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="color: black;"><br /></span></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="color: black;">For those who don’t know,
the Make A Wish<sup>®</sup> Foundation is a wonderful organization that focuses
on granting wishes to children with life-threatening medical conditions.<span style="mso-spacerun: yes;"> </span>In a world that seems to be filled with
negativity and constant challenge, this group moves forward with their mission day in and day out. They do not do it for publicity or for the rich and famous.<span style="mso-spacerun: yes;"> </span>As defined on their webpage they pursue their mission “</span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">to
enrich the human experience with hope, strength and joy.” </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Excellent!</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Emma was first exposed to </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="color: black;">Make A Wish<sup>®</sup> through one of her doctors who
thought she should consider the program before she hit the ripe old age of
18 (when the opportunity ceased).<span style="mso-spacerun: yes;">
</span>He informed her that he had others go through the foundation and were
blessed with a wonderful chance to meet someone they always wanted to meet, go
somewhere they always wanted to go, or do something they always wanted to
do.<span style="mso-spacerun: yes;"> </span>Short of a few small limits, there were none.<span style="mso-spacerun: yes;"> </span>Imagine it and it would become real.<span style="mso-spacerun: yes;"> </span>Dream it and it would
come true.<span style="mso-spacerun: yes;"> Despite this, </span>Emma remained skeptical partially because she didn't feel deserving and partially because (I believe) she was a bit hesitant to accept such a gift which recognizes the challenge she fights so hard to balance. She has chosen not to be known as that girl with Pompe, but rather someone with many talents and skills who also has this condition.</span></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It was a December night
in Princeton when all the pieces came together.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We were in town to celebrate the birthday of a very special
girl who also has chosen to define herself by strength, character, and humor. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">By luck, chance, or fate, our doctor was in attendance along with a couple senior leaders of
the foundation. He introduced us and </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">told them all about Emma’s story and
her hesitation to accept a wish.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;">
</span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Upon hearing the story they explained that she was indeed deserving
because she has a chronic disease which impacts her life each and every day. They urged her to reconsider, but do so quickly as her 18th birthday was fast approaching.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Upon returning from the event, Emma thought it over and agreed to move forward.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;">
</span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">With less than a month to complete all the forms and get all the
approvals, we sprang into action emailing the local and national
representatives, reaching out to our doctor for documentation, and pushing Emma
for a decision on that wish.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;">
</span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Suddenly it was as if she had discovered a genie’s bottle and just one wish to make. It seems easy, but stop think about it. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If someone suddenly offered you one wish what would you
say?</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">After much deliberation,
the wish was set.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It was a trip to
a place she always dreamed of going, but wasn’t sure she would ever make it …Paris.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> She loved the culture, the fashion, the people, and especially the food. She saw herself waking amongst the history and sitting at a street side cafe and watching the world walk by. It was magical! </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Before we knew it, the wish was
submitted and Donna and I were notified it was approved.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We kept it a secret until </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Make A Wish</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><sup>® </sup></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">and a team from the company De Lage Landen (DLL) who raised funds for the wish surprised us with a </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">baking
class at Strawberry Bakery, a wonderful French bakery near our home.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The team </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">coordinated Emma's French Pastry Party as a way to announce
the gift to Emma, have us learn a bit about baking French pastries, enjoy elcairs, croissants, elephant ears, cookies, and have a great time.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> If you are in the Philly area and have a chance be sure to stop by and say hello to </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Jean Pierre at Strawberry Bakery. He is an excellent baker and a kick! (Check out <a href="http://strawberry-bakery.com/">http://strawberry-bakery.com/</a>)</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few days later, more </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Make A Wish</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><sup>® </sup></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">volunteers
arrived at our door with plane tickets, hotel reservations, tour schedules and
much more. The whole trip was planned out from start to finish. Before we knew it, the five of us packed our bags, loaded into</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> a
limo, and were on our way!</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We landed in Paris the next morning and
were greeted by a driver who whisked us off to Hotel Claude Bernard.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As soon we arrived, the kids raced to their room, opened the door
to their balcony, took in the view, and were amazed.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In that first glance we knew Paris would be everything she wished it would be...simply amazing!</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We wasted no time and began our adventure by walking to a local café for lunch.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Emma went right for the steak with pommes frites followed by
Crème Brulee and the first of many cappuccinos.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Make A Wish</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><sup>®</sup></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> team smartly planned tourist buses for us so we could see the city while limiting the amount of walking the girls had to do.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> So, t</span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">he next day we hit the tourist circuit visited Notre Dame, Champs Elysses, the Arc de Triomphe, the Eiffel Tower, and the Louvre. Our trip was finished with a fantastic midnight cruise on the Seine, taking in the Paris nightlife along the river, and seeing the Eiffel Tower shining like a beacon for all to see.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Each day we would stop and find a new cafe and enjoy lunch and Emma’s third, fifth, and ninth cappuccino. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Each night we took a
different dining adventure trying out a recommended restaurant here and
guessing on another there.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The kids
ate caviar, crepes, croissants, steaks, pastas, macaroons, escargot, duck, foie
gras, chocolate mousse, more croissants, and a wee bit of wine.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As you can see, we did not starve and
everyone stepped just a bit out of the comfort zone and into the lives of the
locals.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It was lovely.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Along the way something
unexpected happened.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Amongst a sea
of people speaking all types of languages, the five of us bonded as a family. We all knew summer would be ending soon and with that things would change.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Soon,
Emma would be moving away to college, Maddie would start high school, and football would take over Carter's life. W</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">e f</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><a href="http://www.blogger.com/blogger.g?blogID=1403927290529132193" name="_GoBack"></a></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">ound that more than
just a girl’s dreams came true so did that of her parents'.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Surely Paris was her destination of choice, but it also turned out to be the ideal place for us to be</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> together, talk together, laugh together, and join Emma on her twelfth, thirteenth, and
sixteenth cappuccino.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In the end, it was a very
humbling and emotional experience for all of us.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Being exposed to the </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Make A Wish</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><sup>®</sup></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> and the DLL team reminded us once again that there are many wonderful people out there doing great
work on behalf of those who need a helping hand. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">To everyone we met and to those we didn't, we want to say thank you.</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;">
</span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Thank you for a great trip with great memories, but most
importantly, thank you for allowing a young lady the chance to make her Paris dream a reality. Thank you for allowing her to stop, close her eyes, and believe that</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">… </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span style="mso-spacerun: yes;"> </span></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i style="mso-bidi-font-style: normal;"><br /></i></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i style="mso-bidi-font-style: normal;">When you wish upon a star</i></span><br />
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i style="mso-bidi-font-style: normal;">
Your dreams come true</i> <o:p></o:p></span></span><br />
<span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i style="mso-bidi-font-style: normal;"><br /></i></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: Disney, "When You Wish Upon A Star"<o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<span style="line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">To learn more about the Make A Wish<sup>®</sup> Foundation, please visit
their site at <a href="http://wish.org/">http://wish.org/</a>.</span></span><!--EndFragment-->
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<span style="color: black; line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span>
<span style="color: black; line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Here's a few photos you might enjoy.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Qa3zoTSdvGIDcQJScqzTFIWf_dehlvKclky0vT9JIUxuQsRlD_M49Dd9nnnp0HzARB8WSPCUdOWAjDufuq4dXsUxmResw-PWhIlz5pm-WruQzsAqCalACDF5tqgUYVQwKyHTwyPLTzg/s1600/2013-08-19+02.59.56.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Qa3zoTSdvGIDcQJScqzTFIWf_dehlvKclky0vT9JIUxuQsRlD_M49Dd9nnnp0HzARB8WSPCUdOWAjDufuq4dXsUxmResw-PWhIlz5pm-WruQzsAqCalACDF5tqgUYVQwKyHTwyPLTzg/s640/2013-08-19+02.59.56.jpg" width="640" /></a></div>
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<span style="color: black; line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Emma's French Pastry Party</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijrIAIc_1CfZiz-digaupC2PC5vxW-kmHoKeoo7qV4Gd-sq7-yMu12S7D0rCTF3gGVIUEQZHDHTRObM5rXfjm0Nnbmlpt1UKAi8JhhPb0XO2pon-S9H6s9q5Qfh_-r8c5-LNuSRbvNJws/s1600/2013-08-19+03.16.30.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijrIAIc_1CfZiz-digaupC2PC5vxW-kmHoKeoo7qV4Gd-sq7-yMu12S7D0rCTF3gGVIUEQZHDHTRObM5rXfjm0Nnbmlpt1UKAi8JhhPb0XO2pon-S9H6s9q5Qfh_-r8c5-LNuSRbvNJws/s640/2013-08-19+03.16.30.jpg" width="480" /></a></div>
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Bon Voyage from the <span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Make A Wish</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><sup>® </sup></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">and De Lage Landen teams</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgihFkFr2hBsarsSpX97q_RdqHnptr2l6Bb45d988NF3yY9J-bnnWfeTIb-Se86qT-fXHnGzEHlB3kUcnlZQYbLiPRNkbEGTRACfBSDasS7iMPGkduqLiiuCcIRuoUOqEKFickKd7XShKw/s1600/IMG_4171.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgihFkFr2hBsarsSpX97q_RdqHnptr2l6Bb45d988NF3yY9J-bnnWfeTIb-Se86qT-fXHnGzEHlB3kUcnlZQYbLiPRNkbEGTRACfBSDasS7iMPGkduqLiiuCcIRuoUOqEKFickKd7XShKw/s640/IMG_4171.jpg" width="480" /></a></div>
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An excellent view of Notre Dame from the kids' room </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2gOhThpW-JzdZCdJxWylC2r_0vusWuMIToHawp7bE61lvJyCdoN6nCkeXnuhFpEfVOaM14M_gqiTVw3_CbJOjzmCphB3xIhS8DwGM_96sT24l-aSylYsqvuzgzrKPzEmy5q-MfN0aeOc/s1600/IMG_1895.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2gOhThpW-JzdZCdJxWylC2r_0vusWuMIToHawp7bE61lvJyCdoN6nCkeXnuhFpEfVOaM14M_gqiTVw3_CbJOjzmCphB3xIhS8DwGM_96sT24l-aSylYsqvuzgzrKPzEmy5q-MfN0aeOc/s640/IMG_1895.PNG" width="426" /></a></div>
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Hello from the Louvre</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCGuWesMIne63Zqa4gn7WpARVDT4KNHPKhm4r7wBj-KJ9cBI5L5A06jvyqsZEHFUNzA6Q839adhJZOVycfcxeTZC1fLEjMxgYxmRlKxXIvSgargNtWLfbkXXLBRhWIFyXNZ-1H8vIQU2o/s1600/IMG_3237.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCGuWesMIne63Zqa4gn7WpARVDT4KNHPKhm4r7wBj-KJ9cBI5L5A06jvyqsZEHFUNzA6Q839adhJZOVycfcxeTZC1fLEjMxgYxmRlKxXIvSgargNtWLfbkXXLBRhWIFyXNZ-1H8vIQU2o/s640/IMG_3237.jpg" width="480" /></a></div>
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Emma's 15th or was it 17th cappuccino?</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJl49ekbUn0Lt4-GroIpRPNBttOch7iGPVWP5TxW58HXT-40UDfr4-Vy9ifmhf71KJJ8mpZNz5WHY_7IzoT1p93DS8XfP3k33Vg6sMbCZ9MmzD_-RLAap1wqzUDcVvehR-Ds7kCBSy-jY/s1600/IMG_2213.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJl49ekbUn0Lt4-GroIpRPNBttOch7iGPVWP5TxW58HXT-40UDfr4-Vy9ifmhf71KJJ8mpZNz5WHY_7IzoT1p93DS8XfP3k33Vg6sMbCZ9MmzD_-RLAap1wqzUDcVvehR-Ds7kCBSy-jY/s640/IMG_2213.jpg" width="426" /></a><br />
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A midnight cruise along the Seine </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRAt0pNhruR68TOr4bL9csoUARNyVciLMkpp1W3CRmualTNCgW03iE9fC9WX-rXlYmzMJ6zlQA28JnKIGnvtwbMnRFizuI7LTK4u-yMELoThILnzBAOt-cuG-_ex7GVFjIR-YVahZgBls/s1600/2013-08-19+02.54.21.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRAt0pNhruR68TOr4bL9csoUARNyVciLMkpp1W3CRmualTNCgW03iE9fC9WX-rXlYmzMJ6zlQA28JnKIGnvtwbMnRFizuI7LTK4u-yMELoThILnzBAOt-cuG-_ex7GVFjIR-YVahZgBls/s640/2013-08-19+02.54.21.jpg" width="640" /></a></div>
<div style="text-align: center;">
<span style="color: black; line-height: 115%;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Make A Wish!</span></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1403927290529132193.post-79409270501938810652013-08-06T22:02:00.003-04:002013-08-06T22:13:25.740-04:00Back in the U.S.S.R. - Maddie's Mission on Facebook!<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Oh, flew in from Miami Beach B.O.A.C.<br />Didn't get to bed last night<br />On the way the paper bag was on my knee<br />Man I had a dreadful flight<br />I'm back in the U.S.S.R.<br />You don't know how lucky you are boy<br />Back in the U.S.S.R.<br /><br />Been away so long I hardly knew the place<br />Gee it's good to be back home<br />Leave it till tomorrow to unpack my case<br />Honey disconnect the phone<br />I'm back in the U.S.S.R.<br />You don't know how lucky you are boy<br />Back in the U.S.<br />Back in the U.S.<br />Back in the U.S.S.R.</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Writing a blog is an interesting experience because it is so interactive. It is much different than writing a book where the reader has little opportunity to respond to the writer. A blog offers the opportunity for the back and forth communication which makes the process so much more appealing to me. In the early days we received tons of comments on each post because the emotion was high and each post was full of new information about a disease no one had heard about. Over time, the comments naturally became less, but were still filled with witty comments and thoughts on the topic at hand. That was until my friends in the former U.S.S.R. took notice. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">One of the cooler things about the Google blog site is the opportunity to review statistics. The stats page outlines the number of pageviews, traffic sources, popular posts, and audience reach. The Audience link outlines the pageviews by web brower, operating system, and my favorite - by country. The page has a nice map highlighted with colors based on reach (see below). </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When we first started to post blogs we expected to see the views grow in the United States because of our family and friends. Over time we were thrilled to see the occasional spotting in Europe and even </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Australia. We knew some Pompe folks in these areas and hoped they were checking into our story and enjoying the journey. During all this time the comments kept rolling in either from folks we knew or anonymous posters who sounded a lot like people we knew. And then came the Russian invasion!</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Once in a while I would notice strange comments like:</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="color: #222222;"><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Very nice article. I certainly appreciate this site. Keep it up! Feel free to surf to my blog post ...</span></i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">or </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #222222;"><br /></span></span>
<span class="Apple-style-span" style="color: #222222;"><i><span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Very nice article. I certainly appreciate this site. Keep it up! Feel free to surf to my blog post ...</span></i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #222222;"><br /></span></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #222222;">At first, my twelve years of Catholic School told me to answer, "How nice!" Then, once the volume of the comments increase dramatically, reality set in that the site was being hit by spammers. After clicking every one of their bogus links (kidding), I turned off the comment option so nothing more could come in. The only problem is, by doing so, we lost the opportunity to connect with our family and friends. So, we set up a Facebook page and called it...surprise...Maddie's Mission.</span></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #222222;"><br /></span></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #222222;">On the Facebook page we add each new post plus information on Pompe, Muscular Dystrophy, etc. However, the main goal is to give our family and friends a place to comment on our posts or leave messages for the girls. </span></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #222222;">If you are interested in checking it out and "Liking" it the address is <a href="https://www.facebook.com/pages/Maddies-Mission/343231419122252">https://www.facebook.com/pages/Maddies-Mission/343231419122252</a>.</span></span><span class="Apple-style-span" style="color: #222222; font-family: Verdana, sans-serif;"> </span> <br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If you have extra time, I can always send you links from my friends in Russia, Latvia, and the Ukraine, but I have a feeling you don't want those! </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: The Beatles, "Back in the U.S.S.R"</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: 13px;"></span></span><br />
<h3 class="GIL3GQOBDN GIL3GQOBAN blogg-title" id="topCountriesLabel" style="border-bottom-color: rgb(235, 235, 235); border-bottom-style: solid; border-bottom-width: 1px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #333333; font-family: 'Open Sans', Helvetica, Arial, sans-serif; font-size: 18px; font-style: inherit; font-weight: 400; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 10px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></h3>
<h3 class="GIL3GQOBDN GIL3GQOBAN blogg-title" id="topCountriesLabel" style="border-bottom-color: rgb(235, 235, 235); border-bottom-style: solid; border-bottom-width: 1px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #333333; font-family: 'Open Sans', Helvetica, Arial, sans-serif; font-size: 18px; font-style: inherit; font-weight: 400; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 10px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">See someone you know?</span></h3>
<h3 class="GIL3GQOBDN GIL3GQOBAN blogg-title" id="topCountriesLabel" style="border-bottom-color: rgb(235, 235, 235); border-bottom-style: solid; border-bottom-width: 1px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #333333; font-family: 'Open Sans', Helvetica, Arial, sans-serif; font-size: 18px; font-style: inherit; font-weight: 400; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 10px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Pageviews by Countries</span></h3>
<div aria-labelledby="topCountriesLabel" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><img alt="Graph of most popular countries among blog viewers" class="gwt-Image" role="img" src="http://chart.googleapis.com/chart?chf=bg,s,EAF7FE&chs=320x160&cht=t&chco=F9FFED,E0FFD5,236A13&chld=AUCADEFRGBGRLVRUUAUS&chd=s:AABAAAABA9&chtm=world" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; height: 160px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline; width: 320px;" /></span></div>
<div aria-hidden="false" class="GIL3GQOBGN" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div aria-label="Popular countries" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<table __gwtcellbasedwidgetimpldispatchingblur="true" __gwtcellbasedwidgetimpldispatchingfocus="true" cellspacing="0" class="GIL3GQOBN0" style="-webkit-border-horizontal-spacing: 0px; -webkit-border-vertical-spacing: 0px; border-bottom-width: 0px; border-collapse: separate; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; height: 32px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline; width: 347px;"><colgroup><col></col><col></col></colgroup><thead aria-hidden="false" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<tr __gwt_header_row="0" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><th __gwt_column="column-gwt-uid-457" __gwt_header="header-gwt-uid-458" class="GIL3GQOBM- GIL3GQOBK-" colspan="1" style="border-bottom-color: rgb(111, 114, 119); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #4b4a4a; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 3px; padding-left: 15px; padding-right: 15px; padding-top: 3px; text-align: left; text-shadow: rgb(221, 221, 255) 1px 1px 0px; vertical-align: baseline;">Entry</th><th __gwt_column="column-gwt-uid-459" __gwt_header="header-gwt-uid-460" class="GIL3GQOBM- GIL3GQOBE0" colspan="1" style="border-bottom-color: rgb(111, 114, 119); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #4b4a4a; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 3px; padding-left: 15px; padding-right: 15px; padding-top: 3px; text-align: left; text-shadow: rgb(221, 221, 255) 1px 1px 0px; vertical-align: baseline;">Pageviews</th></tr>
</thead><tbody style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<tr __gwt_row="0" __gwt_subrow="0" class="GIL3GQOBG-" style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBI-" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;" tabindex="0">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
United States</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBC0" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
53239</div>
</td></tr>
<tr __gwt_row="1" __gwt_subrow="0" class="GIL3GQOBG0" style="background-attachment: initial; background-clip: initial; background-color: #f3f7fb; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBI-" style="border-bottom-color: rgb(243, 247, 251); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(243, 247, 251); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(243, 247, 251); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(243, 247, 251); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
Russia</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBC0" style="border-bottom-color: rgb(243, 247, 251); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(243, 247, 251); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(243, 247, 251); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(243, 247, 251); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
870</div>
</td></tr>
<tr __gwt_row="2" __gwt_subrow="0" class="GIL3GQOBG-" style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBI-" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
Germany</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBC0" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
447</div>
</td></tr>
<tr __gwt_row="3" __gwt_subrow="0" class="GIL3GQOBG0" style="background-attachment: initial; background-clip: initial; background-color: #f3f7fb; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBI-" style="border-bottom-color: rgb(243, 247, 251); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(243, 247, 251); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(243, 247, 251); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(243, 247, 251); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
Canada</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBC0" style="border-bottom-color: rgb(243, 247, 251); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(243, 247, 251); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(243, 247, 251); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(243, 247, 251); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
417</div>
</td></tr>
<tr __gwt_row="4" __gwt_subrow="0" class="GIL3GQOBG-" style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBI-" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
Latvia</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBC0" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
414</div>
</td></tr>
<tr __gwt_row="5" __gwt_subrow="0" class="GIL3GQOBG0" style="background-attachment: initial; background-clip: initial; background-color: #f3f7fb; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBI-" style="border-bottom-color: rgb(243, 247, 251); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(243, 247, 251); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(243, 247, 251); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(243, 247, 251); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
United Kingdom</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBC0" style="border-bottom-color: rgb(243, 247, 251); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(243, 247, 251); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(243, 247, 251); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(243, 247, 251); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
280</div>
</td></tr>
<tr __gwt_row="6" __gwt_subrow="0" class="GIL3GQOBG-" style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBI-" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
Australia</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBC0" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
253</div>
</td></tr>
<tr __gwt_row="7" __gwt_subrow="0" class="GIL3GQOBG0" style="background-attachment: initial; background-clip: initial; background-color: #f3f7fb; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBI-" style="border-bottom-color: rgb(243, 247, 251); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(243, 247, 251); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(243, 247, 251); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(243, 247, 251); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
France</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBC0" style="border-bottom-color: rgb(243, 247, 251); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(243, 247, 251); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(243, 247, 251); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(243, 247, 251); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
169</div>
</td></tr>
<tr __gwt_row="8" __gwt_subrow="0" class="GIL3GQOBG-" style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBI-" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
Ukraine</div>
<div style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
</div>
</div>
</td><td class="GIL3GQOBF- GIL3GQOBH- GIL3GQOBC0" style="border-bottom-color: rgb(255, 255, 255); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(255, 255, 255); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(255, 255, 255); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(255, 255, 255); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
124</div>
</td></tr>
<tr __gwt_row="9" __gwt_subrow="0" class="GIL3GQOBG0 GIL3GQOBN-" style="background-attachment: initial; background-clip: initial; background-color: #eeeeee; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBI- GIL3GQOBO-" style="border-bottom-color: rgb(238, 238, 238); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(238, 238, 238); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(238, 238, 238); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(238, 238, 238); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-461" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
<div class="GIL3GQOBBO" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-overflow: ellipsis; vertical-align: baseline; white-space: nowrap; width: 220px;">
Greece</div>
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</td><td class="GIL3GQOBF- GIL3GQOBH0 GIL3GQOBC0 GIL3GQOBO-" style="border-bottom-color: rgb(238, 238, 238); border-bottom-style: solid; border-bottom-width: 2px; border-color: initial; border-left-color: rgb(238, 238, 238); border-left-style: solid; border-left-width: 2px; border-right-color: rgb(238, 238, 238); border-right-style: solid; border-right-width: 2px; border-style: initial; border-top-color: rgb(238, 238, 238); border-top-style: solid; border-top-width: 2px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; overflow-x: hidden; overflow-y: hidden; padding-bottom: 2px; padding-left: 15px; padding-right: 15px; padding-top: 2px; vertical-align: baseline;"><div __gwt_cell="cell-gwt-uid-462" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">
68</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1403927290529132193.post-38852758225548181902013-07-04T11:30:00.002-04:002013-07-04T11:30:39.297-04:00Come Together<span style="font-family: Verdana, sans-serif;"><em>Here come old flat top</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He come groovin' up slowly</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He got joo joo eyeballs</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He one holy rollers</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He got hair down to his knee</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Got to be a joker</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He just do what he please</em></span><br />
<br />
<span style="font-family: Verdana, sans-serif;"><em>He wear no shoeshine</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He got toe jam football</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He got monkey finger</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He shoot Coca Cola</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>He say I know you, you know me</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>One thing I can tell you is</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>You got to be free</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Come together, right now</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Over me</em></span><br />
<br />
<span style="font-family: Verdana;">Many years ago I was that guy in the car next to you...singing along to FM radio and using the steering wheel as a drum set. Unless the singer was clear or I was lucky enough to find an album with liner notes, I had no idea what the lyrics were so filled them in with something that sounded right. </span><span style="font-family: Verdana;">One song that challenged me over and over again was </span><span style="font-family: Verdana;">The Beatles "Come Together". Despite many mumbles and guesses, I could never figure out the lyrics or what they all meant. While it might have meant more if I knew the lyrics, I was perfectly fine as long as I could belt out the message "</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>Come together, right now</em></span><span class="Apple-style-span" style="font-family: Verdana;">"! </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">On March 17th we attended the third annual MDA Muscle Walk in King of Prussia. Our goal was to raise awareness for Muscular Dystrophy and money for Pompe Disease research. Once again, we were blessed with incredible support from our family and friends allowing us to raise over $5,000! In addition, we were joined by an ever larger group of friends who walked alongside us to celebrate the day and show support for our family.</span><br />
<br />
<span style="font-family: Verdana;">Like the years before, Donna and I were quite busy the days and weeks ahead as we reached out to raise money and ensure we would again have a big team of walkers. We had a rough first part of the year with Donna's mom's passing, Emma's bout with mono, and all the things that come along with prepping for high school graduation and college so it was a bit of a blur. Regardless, we decided to do our best and hope the event would be as good as in the past. </span><br />
<br />
<span style="font-family: Verdana;">Since this year's walk coincided with St. Patrick's Day, Emma and her friends came up with a great slogan which they painted on green t-shirts - "Lucky Day for the MDA". With a new slogan, new signs, and new energy, the kids and their friends hit the walk with swagger enjoying a great feeling of camaraderie. In addition to the all the teenagers, we were blessed with several of our friends. </span><span class="Apple-style-span" style="font-family: Verdana;">Not surprisingly, the MDA put on another grand event filled with several teams of walkers, live music, and fortunately for us parents lots of coffee! </span><span class="Apple-style-span" style="font-family: Verdana;"><span class="Apple-style-span" style="font-family: Verdana;"> </span></span><span class="Apple-style-span" style="font-family: Verdana;"> </span><br />
<br />
<span style="font-family: Verdana;">That morning I was the greeter. I scurried about collecting last minute donations, directing everyone to the starting point, and distributing t-shirts. Before I knew it the walk was underway so I found a quiet corner and enjoyed the parade. At that moment I was hit by the strangeness of it all. "How did we end up here," I thought. One part of me could clearly remember a young man singing away to the radio without a care in the world while the other couldn't remember life without Pompe Disease or the MDA. </span><span class="Apple-style-span" style="font-family: Verdana;"> </span><br />
<span style="font-family: Verdana;"><br /></span>
<span style="font-family: Verdana;">At the surface it made no sense for us to be at an MDA event. Despite all the wonderful things the organization has done for our family, it still felt like a foreign land at times. This wasn't in the plans a young man laid out while driving down the California freeways, singing away to that Beatles song, but isn't that the beauty of life? Just like the confusing lyrics of the song, you can't always make sense of the future even if it were to be written out ahead of time for all to read. However,</span><span style="font-family: Verdana;"> if we embrace reality, support our kids, and lean on our loved ones we don't have to understand what it all means along the way. We just have to realize the importance of occasionally finding a quiet corner, reflecting on your blessings, and celebrating with those who go out of their way to show their love when they ... </span><span class="Apple-style-span" style="font-family: Verdana;"><em>Come Together!</em></span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">Our good friends Greg and Bob once again volunteered to take photos of the event. Here are a few I think you'll enjoy. </span><br />
<span style="font-family: Verdana;"><br /></span>
<span style="font-family: Verdana;">If you'd like to see more, please see <a href="http://mdamusclewalk2013.com/">http://mdamusclewalk2013.com/</a></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSPX0M_ejiEk9ZVPhXtT5umcUtxt_PfLEUW8L2lG5egu11c2yPYMQb1eoz0VgzsXp6JjD1CX2ErPuRUXBAVUHjpTRme9I8BdHFPLhhm87ugx-S72z9-39f46VkjL2mEeGrDc6ePqriHp8/s960/MDA2013-408.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSPX0M_ejiEk9ZVPhXtT5umcUtxt_PfLEUW8L2lG5egu11c2yPYMQb1eoz0VgzsXp6JjD1CX2ErPuRUXBAVUHjpTRme9I8BdHFPLhhm87ugx-S72z9-39f46VkjL2mEeGrDc6ePqriHp8/s640/MDA2013-408.jpg" width="640" /></a></div>
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A supportive group!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinYrABawQl4VeFF8n9bHH5PZKIHadZe7QJi45qT59CEGr5pmY8kzKZrmouWTljtP2QbIulc4WZUoQL6bQtDhIpXE9ogwds1z2bQT82yfL8xfugXHfDyYtMkGysf2qhc-8FFVDjKsLaJeI/s960/MDA2013-373.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinYrABawQl4VeFF8n9bHH5PZKIHadZe7QJi45qT59CEGr5pmY8kzKZrmouWTljtP2QbIulc4WZUoQL6bQtDhIpXE9ogwds1z2bQT82yfL8xfugXHfDyYtMkGysf2qhc-8FFVDjKsLaJeI/s640/MDA2013-373.jpg" width="640" /></a></div>
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Carter and his friends<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE3IsSvX9N1AqN8ZAX0MCpZ94yrmfI_7Oe_zd7trU5lrqa94zGcYt2xmDrC-H_EycOPjgLs9fLwRe6PieU_kPHeiz7_QBN2Y9xnXlxTkl45llX22A3Gf4mQBcag8ThmlKanLvEVNtJRKo/s960/MDA2013-12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgE3IsSvX9N1AqN8ZAX0MCpZ94yrmfI_7Oe_zd7trU5lrqa94zGcYt2xmDrC-H_EycOPjgLs9fLwRe6PieU_kPHeiz7_QBN2Y9xnXlxTkl45llX22A3Gf4mQBcag8ThmlKanLvEVNtJRKo/s640/MDA2013-12.jpg" width="640" /></a></div>
Maddie and some of the girls<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie54OyzKF5MD16MfpViQHldyv-VLrJ_V7GhTaWHRKEy59HFDWJ4uRDLjlnGsj3qW1JOhNzF0CnJ2y6BRpwSRfjlzOilaM2SvgOKuPClSIx8S9zXNmPALovA5uCTF7giJIhjjlLVWWuEdY/s960/MDA2013-55.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie54OyzKF5MD16MfpViQHldyv-VLrJ_V7GhTaWHRKEy59HFDWJ4uRDLjlnGsj3qW1JOhNzF0CnJ2y6BRpwSRfjlzOilaM2SvgOKuPClSIx8S9zXNmPALovA5uCTF7giJIhjjlLVWWuEdY/s640/MDA2013-55.jpg" width="640" /></a></div>
Showing the signs!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS9PLs-6Rm4NzhsdOgJA9GdKD6dBmEZqC7uiycseSz7FQZMY5Vrbr6a3Ba6QUdcSQ69utRSq861miTF14nuJPILraNz-jZL2k0Ip-HxLGgZ7hAHBMpIrsuwcAeiUlS5SQUbXZx7gPKoMI/s960/MDA2013-59.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS9PLs-6Rm4NzhsdOgJA9GdKD6dBmEZqC7uiycseSz7FQZMY5Vrbr6a3Ba6QUdcSQ69utRSq861miTF14nuJPILraNz-jZL2k0Ip-HxLGgZ7hAHBMpIrsuwcAeiUlS5SQUbXZx7gPKoMI/s640/MDA2013-59.jpg" width="640" /></a></div>
Emma, Maddie, and their friends Liam and Anne Marie</div>
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">Credit to: The Beatles, "Come Together"</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1403927290529132193.post-38995076841913256752013-04-20T21:13:00.001-04:002013-05-09T21:33:12.363-04:00The Sound of Silence<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Hello darkness, my old friend<br />I've come to talk with you again<br />Because a vision softly creeping<br />Left its seeds while I was sleeping<br />And the vision that was planted in my brain<br />Still remains<br />Within the sound of silence</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>"Fools", said I, "You do not know<br />Silence like a cancer grows<br />Hear my words that I might teach you<br />Take my arms that I might reach you"<br />But my words, like silent raindrops fell<br />And echoed<br />In the wells of silence</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It was late 1999 when I first
found myself inside that </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">dark, silent </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">place. A few days before I suffered a Grand mal seizure, was taken to the hospital and told I had a foreign mass in my brain and that only a MRI could confirm what it was. As I lay there, still as could be, my mind raced. I was a young father with a potential life threatening diagnosis and all I could think about is having more time to be with my wife and watch my kids grow. At the same time I was no fool. I knew that my case did not look good and that the pictures appearing on the radiologist's screen were beyond my control. So, I paused, prayed, and told myself to breathe.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In early 2000 the diagnosis
of a brain tumor was confirmed and surgery followed. The day after my doctor told us it was not what he expected, but was better. It was a benign tumor and other than a long recovery and continual monitoring, I should be OK. For many years to come I again found myself in
that dark, silent place. Despite the noise all around me, I heard nothing but my prayers that the scans would be clean and I could walk out with another year of hope. Years past, the MRIs stopped, and my doctor confirmed the
tumor was not returning. While I celebrated that moment, I never forgot the feeling of that room and would use it as motivation to overcome obstacles for years to come. Never did I imagine I would find myself in that
place again, this time on the outside looking in. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Earlier this month we
returned to the University of Florida to continue Emma and Maddie's
observational studies with Dr. Byrne. As each time before, the girls
underwent MRIs to monitor a series of things including the size of their heart and the level of glycogen in their muscles. This time a
new study was presented with the objective to determine the capability of
their diaphragm. For those who don't recall, the diaphragm i</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">s the main muscle of respiration, helping the lungs do
their work. We rely heavily upon it so if the diaphragm is impaired, one's
breathing can be compromised.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A common side effect of adult onset Pompe is weight maintenance. For those who are naturally thin, Pompe can leave one appearing under nourished, almost gaunt. This does not seem to impact Maddie, but it does Emma especially when she is not feeling well. In response to this challenge, we reinforce a high protein diet with necessary supplementation of protein shakes, etc. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Regardless, she hovers around the same weight.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Now don't get
me wrong. The girl can eat! In fact, we have a running joke that she always buys the most expensive and
usually largest meal each time we go to dinner. The girl is a foodie, not
afraid of trying something new or shying away from meals even her brother couldn't finish. </span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I consider
myself a moderately intelligent guy, but remained puzzled by her challenges to
gain weight. As I would sit and watch her down meals that would
leave me signing up for Jennie Craig, I could not understand why she never
gained. I know some readers out there are thinking "I wish I had
that problem," but when the result could mean nighttime feedings via an IV bag,
this father was concerned. So, as we sat eating lunch with the wise Dr.
Byrne I tossed out the question.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">He explained
that if someone has a compromised diaphragm, the rest of the body compensates to ensure breathing continues. He then explained how Emma and a normal person are different by comparing the feeling one has after a
strenuous exercise, where you can barely breathe, to the feeling one has at rest.
Think about it. In the first situation you can barely talk because your muscles are working so hard to get air in your system while with the second you hardly notice. Emma, he said, lives in the space "between" at all times.
While we're relaxing or sleeping, our breathing goes on without issue and our metabolism is slow. On the other hand, because of Pompe, Emma's muscles are working as if she is walking up a steep hill. Even when she is sleeping her body is on exercise mode and her metabolism is churning away. She struggles because her body is over compensating.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Now back to the
MRI at U of F...</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">
</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The new study focuses on the effects of muscular
dystrophy on the diaphragm. To date the doctors have monitored children with
Duchenne muscular dystrophy and now Pompe. During the MRI, they place a vest on the chest, measure the diaphragm at rest, in normal activity, and under stress. As I sat behind our doctor and the radiologist I watched them measure the girls' diaphragms while they held their
breath, took deep breaths, and breathed normally.
The last was fascinating because the screen showed their lungs, chest muscles, diaphragm,
and heart in action. I watched the essence of what keeps them alive wondering and wondered what the specialists were thinking. Was everything normal? Were there areas of concern?<o:p></o:p></span></div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">
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The results came back positive. As expected, Maddie's performance was a bit better than Emma's, but both were acceptable and much better than ones they've seen before. It turns out that Maddie's love of singing was a great diaphragm exercise and that we needed to work with Emma to do something similar. Who knew? <br />
<br /></div>
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
In the end I am very relieved to know we are participating in yet another way to monitor their progress along the winding road of Pompe. Hopefully this will help them and others in the long run. At the same time, as I sat and watched them in that dark, silent room I could not forget the past. I never thought my kids would one day be lying in the same place I did years before and hoped their minds did not race the same way mine did. I hope they were strong. I hope they were confident. <br />
<br /></div>
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In that moment I hope they paused and prayed as the doctor whispered "breathe" ... <i>Within the sound of silence</i></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<o:p></o:p></div>
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Credit to: Simon and
Garfunkel, "The Sound of Silence"<span style="font-size: 11.0pt; mso-bidi-font-size: 12.0pt;"><o:p></o:p></span><br />
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For those who may not know this song, it is a long time favorite of mine. Please be sure to check it out on iTunes or YouTube.<br />
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1403927290529132193.post-5311543305704841002013-04-11T22:46:00.002-04:002013-04-11T23:01:02.236-04:00I'm So Tired<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I'm so tired, I haven't slept a wink<br />I'm so tired, my mind is on the blink<br />I wonder should I get up and fix myself a drink<br />No, no, no.<br /><br />I'm so tired I don't know what to do<br />I'm so tired my mind is set on you<br />I wonder should I call you but I know what you would do<br /><br />You'd say I'm putting you on<br />But it's no joke, it's doing me harm<br />You know I can't sleep, I can't stop my brain<br />You know it's three weeks, I'm going insane<br />You know I'd give you everything I've got<br />for a little peace of mind</i></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few definitions:</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><u>Pompe Disease</u></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> = Pompe disease is a rare inherited neuromuscular disorder that causes progressive muscle weakness in people of all ages.</span></div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">
</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><u>Mononucleosis</u> = a common illness that can leave </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">you feeling tired and weak for weeks or months.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><u><br /></u></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><u>Pompe + Mononucleosis</u> = A nasty mix which leaves you with just one thing to say ... <i>I'm So Tired!</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Back in December 2009 I first mentioned Mononucleosis in the post <a href="http://maddiesmission.blogspot.com/2009/12/long-and-winding-road-to-diagnosis.html">The Long and Winding Road to Diagnosis</a> which outlined Maddie's diagnoses with Pompe. As a reminder... "<span class="Apple-style-span" style="line-height: 20px;">In May 2009 Donna noticed Maddie was losing some hair so took her to the pediatrician who ran blood tests to see if she had a thyroid problem, <u>mono</u>, or another issue that might be linked to hair loss."</span></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
At that time mono was ruled out as her blood tests showed she had already had it when she was young girl. It was then that I first learned that mono was more than a kissing disease. It is typically spread via saliva so one could get it through sharing drinking glasses, eating utensils, and even toothbrushes. At the time we did not know Maddie had mono because the symptoms were similar to the aches and pains of a cold and she likely spent the days just relaxing like a little one usually does. We also had no idea that mono + Pompe would return and would pack a punch.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />In late 2012 we noticed Emma was moving a bit slower than normal, complaining about being tired, and wanting to take some time off school. Now Emma is many things, but a complainer and slacker aren't among them. I've often marveled at her ability to manage through stress and strife with a smile on her face and a quiet confidence, so when she started to complain we paid attention and made a doctor appointment.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When we arrived at the doctor Emma explained that she was run down, achy, nursing a low fever, and struggling to get through her day without wanting to nap. As the symptoms could cover a wide variety of things, Emma was run through the usual battery of tests for the flu, strep, sinus infection, and even bronchitis. All came up negative, but assuming it was an infection of some type we were given a prescription for antibiotics, told to head home, check back in a few more days. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
Those few days past, Emma finished her meds, but there was no progress so we returned to the doctor and asked for help. Then, he introduced a new idea. What about mono? The nurse's daughter had just gone through a long bout with it and though not common, it seemed to be going around. While it was good to hear we might have a diagnosis, it wasn't too promising for a girl with a muscle disease. It was guaranteed to last a long time and take everything out of her. There were no antibiotics and no magic pill to take. You just had to wait it out. We left with a scrip for a blood test and hope that mono was not coming to visit.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The diagnostic test results were clear... 100% positive for mono. It didn't take long for us to notice a decline much more severe than we expected. She stopped making it to school, sleep most of the day, became weaker, and slowly depression set in. There were days she could barely make it up the stairs and lacked the strength to get out of the car. There were others that she stayed in her room all day and all night trying to stay positive, but so exhausted she couldn't leave her bed. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As you can imagine, this became very scary for Donna and I as we wondered how long it would take for her to get better and if her weeks missed from school might jeopardize graduation. A quick call to her muscular neurologist set us straight. We were told a muscle disease (aka Pompe) + mono was one of the worst combinations one could have. Her body was already weak from the Pompe and the exhaustion plus lack of movement was only making it worse. Our expectations of Emma regaining her strength in weeks was misguided. She would not feel better in time for spring. In fact, she might not feel better until college! </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This seemed a bit extreme to me, but our specialist reminded us how long it took Emma to recover from our trip to London. While busy days at the Olympics and crossing the London Tube left the rest of us a bit achy, Emma was exhausted and overwhelmed. By the end of the trip, she struggled to keep moving, and by the time we got home she spent days upon days in bed trying to recover. It was then that we learned that while our bodies walked three miles her's felt like she ran a marathon. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So, after receiving a medical release for her missed school, Emma settled in for the long haul and focused not on feeling ill, but on feeling better. Day by day she looked for the positive. Emma showed her maturity by staying in touch with her specialists and following their recommendations to eat well and stay active so muscle atrophy would not cause long term problems. So a couple times a week, she got dressed with her best workout clothes and braved an exhausting five minute walk on the treadmill. It still seems crazy, but that's all she could do.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This week she's returning to school full time and we're starting to recognize our old Emma again. That familiar smile has returned, that laugh is back in the house, and she's off in the car to rekindle friendships that took a backseat to mono. We are relieved to see our daughter back and she seems relieved to be feeling a bit better. Most importantly, she's up in the morning, putting a smile on her face, taking on life and no longer saying ...</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> <i>I'm so tired!</i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Now that's a reason to celebrate!</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: The Beatles, "I'm So Tired" </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> </span></div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1403927290529132193.post-59913013860689088682013-02-27T18:16:00.000-05:002013-02-27T18:16:15.724-05:00Teach Your Children Well<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>You, who are on the road</em></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>Must have a code that you can live by</em></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>And so become yourself</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>B</em><span class="Apple-style-span"><em>ecause the past is just a good bye.</em></span></span><br />
<span style="font-family: Verdana, sans-serif;"><em><br /></em><em>Teach your children well</em></span><br />
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<em><span style="font-family: Verdana, sans-serif;">Their father's hell</span></em></div>
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<em><span style="font-family: Verdana, sans-serif;">Did slowly go by</span></em></div>
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<em><span style="font-family: Verdana, sans-serif;">And feed them on your dreams</span></em></div>
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<em><span style="font-family: Verdana, sans-serif;">The one they picks</span></em></div>
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<em><span style="font-family: Verdana, sans-serif;">The one you'll know by</span></em></div>
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<span style="font-family: Verdana, sans-serif;"><em><br /></em><em>Don't you ever ask them why</em></span></div>
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<em><span style="font-family: Verdana, sans-serif;">If they told you, you will cry</span></em></div>
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<em><span style="font-family: Verdana, sans-serif;">So just look at them and sigh</span></em></div>
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<em><span style="font-family: Verdana, sans-serif;">And know they love you</span></em></div>
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<span style="font-family: Verdana, sans-serif;"><em><br /></em><em></em></span></div>
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<span style="font-family: Verdana, sans-serif;">The answer to the question, "What would you do if you won the lottery?", always intrigued me as it offers a window into a person's true ambitions. If all financial road blocks were removed and all financial responsibilities were met, what would you do? The immediate response is usually, "I'd quit!" OK, but what then? After all, most of us couldn't just sit on the sofa and watch television for the rest of our lives. OK, at least <em>some</em> of us couldn't. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><span style="font-family: Verdana, sans-serif;">For me the answer is simple. I would spend more time with my family and I would teach. I would teach so I could share what knowledge I have gained and I would teach to inspire and hopefully motivate others to do their best and follow their own dreams with or without lottery winnings. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><span style="font-family: Verdana, sans-serif;">Now for those of you might be concerned you'll end up in a classroom listening to me ramble on and on, don't worry. There was a time in college where I thought about taking that path, but for this reason and that reason serendipity took me in another direction. I am now gainfully employed in another field and do not play the lottery. So, I thought my dream of becoming a teacher was no longer valid. That was until I looked back upon our talk at Genzyme. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><span style="font-family: Verdana, sans-serif;">A few weeks back I received a call asking if we would be willing to speak at a special Genzyme meeting. The event would bring their CEO, WW Executive Team, and over 250 employees from over 50 countries to Boston. Genzyme decided they wanted to do something different and hear from an entire family facing rare disease and chose us. We had been waiting for the opportunity to speak directly to the group of people who have changed our family's life and the Global Leadership Team meeting seemed to be the perfect venue. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><span style="font-family: Verdana, sans-serif;">I'd given other speeches about our family before, but this was different. This was not for a group of people raising money or even patients and their families. This was a group of people who directly impact my daughters' lives, with their IV treatment, and are active with the support of many others managing life with a rare disease. The usual speech would not suffice. My goal was not just to say thank you. By sharing a day in the life, my goal was to inform, inspire, and motivate. Without realizing it at the time...my goal was to teach.</span><br />
<span style="font-family: Verdana, sans-serif;"><br />We arrived in Boston the night before the event and planned to meet up with our Genzyme friends over dinner. Before doing so, they were kind enough to allow me to check out the meeting room so I could understand the layout and see where I would be speaking. I had prepared an updated set of slides and practiced a few times at home, but was still not sure how I could best relate our story to the crowd. That was until we saw this mural... <em><br /></em></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqmd4jaqlqK7Bt3k02oZXdDyeqhYMg5eULgGNJ9gUJ_p0zY-a1VE3BMYKeHE7qqaXIN6xTrlHoOcSLpBFAMfbkRBLWJAYWMx4puJ1VyW_Kbd0G6UnrQ-r_iBkgkhSmUR1Il44RZuiP2Ws/s1600/Mural-1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="384" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqmd4jaqlqK7Bt3k02oZXdDyeqhYMg5eULgGNJ9gUJ_p0zY-a1VE3BMYKeHE7qqaXIN6xTrlHoOcSLpBFAMfbkRBLWJAYWMx4puJ1VyW_Kbd0G6UnrQ-r_iBkgkhSmUR1Il44RZuiP2Ws/s640/Mural-1.jpg" width="640" /></span></a></div>
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<span style="font-family: Verdana, sans-serif;">According to our hosts, the attendees were given
sections of the mural the day before and asked to draw what they thought a
journey with rare disease might look like. The result was a road with
people traveling the journey hand in hand amongst flowers, hillsides
covered with the sun, and the word "Hope" in many languages.
The Genzyme team was very proud of the results and I thought to
myself..."Perfect!"<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">As expected by anyone who reads this blog, I
incorporated song titles into my presentation. The first
one read "The Long and Winding Road of Diagnosis", the next
"Here Comes the Sun", etc. How's that for coincidence?<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">After enjoying a wonderful dinner and meeting new
friends (including one who is running the Boston Marathon in honor of our girls
- blog post to follow), we headed back to the hotel to settle
in. Usually I can sleep in any hotel room, but for some reason that night
I had little success. At first, I thought it was the bed or
the firehouse across the street, but no. I could not sleep because I
kept visualizing myself giving the speech over and over. My body said, “sleep”,
but my brain said, "Get busy! You've got to do your best!"<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">The next morning, we were up and out by 8 AM so
we could grab breakfast before the talk at 9:30. When the time came
to begin, I was impressed by the
choreography. We were fitted with individual mics, entered through a
side door, received two introductions, and then took the stage. The
process made me feel like I should burst out in song, but then remembered that
singing is Maddie's thing and definitely not mine.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">When I start a speech, I usually share
some corny joke or story about myself to break the ice, but neither
were appropriate since English was a second language for most of the
audience. So this time I started with a simple hello...with the
help of Emma's iPhone. It went a little like this:<o:p></o:p></span></div>
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<br /></div>
<div align="center" class="MsoNormal" style="font-style: normal; text-align: center;">
<span style="font-family: Verdana, sans-serif;">"Welcome, Bonjour,
Bienvenidos, Bonjourno, Wilkommen,<o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="font-style: normal; text-align: center;">
<span style="font-family: Verdana, sans-serif;">and (for my Brazilian
friends) Bein-vindo." <o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;"> <o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">My talk began with the diagnosis, and
continued for over 30 minutes speaking about the transition to IV therapy,
perspectives on living with Pompe from the patient's and caregiver's view, some
lessons learned, and the "Welcome to Holland" story.
(Please see this post link for the story <a href="http://maddiesmission.blogspot.com/2010/02/welcome-to-holland.html"><span style="color: #0000e9; text-decoration: none; text-underline: none;">http://maddiesmission.blogspot.com/2010/02/welcome-to-holland.html</span></a>). <o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">Usually I end my talk there, but this time we
decided to take a different approach. This time, I left them with a
challenge to <i>IMAGINE</i>. I asked them to <i>IMAGINE</i> what they
could do to improve a treatment so other children can have the same success
ours have. I asked them to <i>IMAGINE</i> what more they could do to help
families they know and those they have yet to meet. I asked
them to take the challenge back to their teams across the globe and <i>IMAGINE</i>
what they could do to make one patient's or caregiver's life
better. In summary, I asked them to <i>IMAGINE</i> what they could
do to ensure each patient's experience ended on a road to sunshine, just like their
mural. <o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">We finished the session with a number of
questions. We received questions about coping, about the girls'
experience at school, about friends, about Carter, and about how we juggle
it all. We then got a question directed to the
girls asking what they wanted to do with their lives...what was their
dream? Emma explained she wanted to take what she had learned
through Pompe and use it as motivation to help others through a
mastery of genetics. Maddie, with no hesitation, said she wanted to
live in New York City and star on Broadway or live in Los
Angeles and star in movies. They were both asked about
limitations from Pompe and basically came back with the same answer. They
don't think about what they can't do. They think about what they
can. I smiled.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">After the session we received a number of
thank you’s, a few vague comments about speaking again somewhere around
the world, and questions about what I do for a living. I was asked
several times if I give speeches professionally because it was so
natural and so fluid. I thanked everyone for their compliments and
then laughed it off saying that while I may give some talks at
work, they probably just caught me on a lucky day.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">A few days later I was still living off the high
of the experience and called my mom to share. During our
conversation she told me about how much my dad loved giving
speeches. She explained how he had told her that while he might
be fearful at first, if he was speaking about something he believed
in, he could talk for hours. He enjoyed the opportunity to share his
thoughts and engage with the crowd. In his own way, he loved to
teach.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">Last week would have been my dad's 85th
birthday. Unfortunately, he passed a number of years before we
first heard the words Pompe disease and before I ever stood in front
of a crowd to tell our story. Regardless, I now have a better
appreciation for why I love to do it. Just like writing this blog,
I speak because I believe that sharing our story will motivate another to
advocate for their children, to seek out treatment for themselves, or simply to
Hope. Just like my dad, I do it because I love to teach.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">When my kids look back and remember that cold
Boston day, I expect they will recall much more than just a speech. They
will recall the very unique opportunity we had to meet such wonderful people,
to share our story, and to strengthen each other through the process. For
me, I will remember two things. I will remember the opportunity I had to
hopefully give back just an ounce of the value a group of people had given
us. I will also remember the opportunity to sit back and hear
my girls talk not of limitations, but of ambitions and of dreams to a room
filled with supporters.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-style: normal;">
<br /></div>
<div class="MsoNormal" style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;">In the end, I realize that I can teach in other
places than just a classroom and may just take it up here and there.
However, after hearing my girls, I realize I still have so much to learn
from our three young adults and their ongoing journey down The Long and Winding
Road. No worries though. I've got my #2 pencil in hand, a new
notebook, and am all ears so they can... <o:p></o:p></span></div>
<!--EndFragment--><div style="font-style: normal;">
<span style="font-family: Verdana, sans-serif;"> </span></div>
</div>
<div style="font-style: normal; margin: 0px;">
<em><span style="font-family: Verdana, sans-serif;">Teach your parents well</span></em></div>
<div style="font-style: normal; margin: 0px;">
<em><span style="font-family: Verdana, sans-serif;">Their children's hell will slowly go by</span></em></div>
<div style="font-style: normal; margin: 0px;">
<em><span style="font-family: Verdana, sans-serif;">And feed them on your dreams</span></em></div>
<div style="font-style: normal; margin: 0px;">
<em><span style="font-family: Verdana, sans-serif;">The one they picks, the one you'll know by</span></em></div>
<div style="font-style: normal; margin: 0px;">
<span style="font-family: Verdana, sans-serif;"><em><br /></em><em>Don't you ever ask them why</em></span></div>
<div style="font-style: normal; margin: 0px;">
<em><span style="font-family: Verdana, sans-serif;">If they told you, you will cry</span></em></div>
<div style="font-style: normal; margin: 0px;">
<em><span style="font-family: Verdana, sans-serif;">So just look at them and sigh</span></em></div>
<div style="font-style: normal; margin: 0px;">
<em><span style="font-family: Verdana, sans-serif;">And know they love you</span></em></div>
<div style="font-style: normal; margin: 0px;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="font-style: normal; margin: 0px;">
<span style="font-family: Verdana, sans-serif;">Thanks to everyone at Genzyme for their hospitality, but especially to Kathleen Coolidge for inviting us, hosting us, and continuing to inspire many Pompe patients through her work in Patient Advocacy. Bravo!</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Credit to: Crosby, Stills, and Nash, “Teach Your Children”</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Here are a few photos from the event. Enjoy!</span></div>
<div style="font-family: Arial; font-style: normal; margin: 0px;">
<span style="font-family: Verdana, sans-serif;"><br /><em></em></span></div>
<div class="separator" style="clear: both; font-family: Verdana, sans-serif; margin: 0px; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF9K6AEs1bOIr9Vk4_Cn7LugQeBDAuYh0-r0DtB9tnwxm5iEccz4jxpzhSjNJPkAKFKvecA5r8HU5xlDZ1xeA-T3k95sWU5aSiMZPYgyQAghyRBtWufYz8HsOl_ckK-R4-eTLktsKYzNg/s1600/GLM1D_029.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="420" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjF9K6AEs1bOIr9Vk4_Cn7LugQeBDAuYh0-r0DtB9tnwxm5iEccz4jxpzhSjNJPkAKFKvecA5r8HU5xlDZ1xeA-T3k95sWU5aSiMZPYgyQAghyRBtWufYz8HsOl_ckK-R4-eTLktsKYzNg/s640/GLM1D_029.jpg" width="640" /></a></div>
<div style="font-family: Verdana, sans-serif; margin: 0px;">
<div style="text-align: center;">
<span style="font-family: Verdana, sans-serif;">Kicking off the speech with welcomes from across the globe.</span></div>
<br /></div>
<div class="separator" style="clear: both; font-family: Verdana, sans-serif; margin: 0px; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIpy6hrjSbAuhypfDaHfq_GUZ_RSotHAN7x4ldHA3r4dCrfwWVIxGcQu1NLouydnmRUgtbwCr3oR7zT_KX2JYXn5Yfn4gaObGZ9NgBF_sSI21Dh4ZUgrBy0LZdl5Q8u4ojVCBb7bk0VuI/s1600/GLM1D_032.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="427" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIpy6hrjSbAuhypfDaHfq_GUZ_RSotHAN7x4ldHA3r4dCrfwWVIxGcQu1NLouydnmRUgtbwCr3oR7zT_KX2JYXn5Yfn4gaObGZ9NgBF_sSI21Dh4ZUgrBy0LZdl5Q8u4ojVCBb7bk0VuI/s640/GLM1D_032.jpg" width="640" /></a></div>
<div style="font-family: Verdana, sans-serif; margin: 0px; text-align: center;">
Explaining how the mural truly represents the rare disease journey</div>
<div class="separator" style="clear: both; font-family: Verdana, sans-serif; margin: 0px; text-align: center;">
</div>
<div style="font-family: Verdana, sans-serif; margin: 0px;">
<br /></div>
<div style="font-family: Verdana, sans-serif; margin: 0px;">
<br /></div>
<div class="separator" style="clear: both; font-family: Verdana, sans-serif; margin: 0px; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAx0E8cRm96oEkB-HEGszovRUkutVBwHNTkcl15Pq7bIzjXuLLNujcqzELuCsnTBW-XQPL1_IYL5ck99sYigw73HFv0p0B1bgY24Ptpth7ckf7WjaCXtQTG6RpV8BWwZzzzpD9suT4DvA/s1600/GLM1D_052.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAx0E8cRm96oEkB-HEGszovRUkutVBwHNTkcl15Pq7bIzjXuLLNujcqzELuCsnTBW-XQPL1_IYL5ck99sYigw73HFv0p0B1bgY24Ptpth7ckf7WjaCXtQTG6RpV8BWwZzzzpD9suT4DvA/s640/GLM1D_052.jpg" width="640" /></a></div>
<div style="font-family: Arial; font-style: normal; margin: 0px;">
<div style="text-align: center;">
<span style="font-family: Verdana, sans-serif;">Lots of smiles as the girls answer questions about their futures.</span></div>
</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1403927290529132193.post-27686139118887306732013-02-09T18:43:00.000-05:002013-02-15T22:41:53.344-05:00Mr. Postman...Wait!<!--[if gte mso 9]><xml>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Wait! <span class="Apple-style-span" style="font-size: small;"><o:p></o:p></span></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Oh yes, wait just a minute Mr. Postman <o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Wait! <o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Wait Mr. Postman <o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Mr. Postman, look and see <o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">If there's a letter in your bag for me <o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">I've been waiting a long long time <o:p></o:p></span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Since I heard from that gal of mine</span></i><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">A couple of weeks ago my work brought me to New York City. For those that do not know, NYC can be a tough place to drive unless your car is yellow and says Taxi on top. So, this time I choose the train. As I exited Penn Station and stood in line for a taxi to midtown I noticed the historic New York City Post Office which as you can see looks like a building you are more likely to see in Europe.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCb_eo6kMfTM9-vlG44fXdwZJBHgsbZbM7cf7_W6RRCNYy_wa6mIGVzkNHH1iCmZKxg88NrTli8VT3A1vpkh6FvUeLNEcCmP4zz4YXC8Ktx-BnShnSCp9DwbhlJUw6LFKLhdSiIh3duBQ/s1600/new-york-city-general-post-office.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="203" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCb_eo6kMfTM9-vlG44fXdwZJBHgsbZbM7cf7_W6RRCNYy_wa6mIGVzkNHH1iCmZKxg88NrTli8VT3A1vpkh6FvUeLNEcCmP4zz4YXC8Ktx-BnShnSCp9DwbhlJUw6LFKLhdSiIh3duBQ/s640/new-york-city-general-post-office.jpg" width="640" /></a></div>
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<span class="Apple-style-span" style="font-family: Verdana;"><br /></span></div>
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<span style="font-family: Verdana;">When admiring the building amongst the hustle and bustle of the street, my eyes were drawn to the words carved above the columns. </span></div>
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<span style="font-family: Verdana;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: Verdana;"><i>Neither snow nor rain nor heat nor gloom of night stays these </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana;"><i>couriers from the swift completion of their appointed rounds.</i></span></div>
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<span style="font-family: Verdana;"><br /></span></div>
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<span style="font-family: Verdana;">I've heard these words on a TV ad or two in the past, but like some things I never paid much attention. However, for some reason this time they stuck. This time they made me think way back to the early 1970s and a story about a little boy, his brothers, and of course a mailman. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">I guess I was about four or five at the time of the story and we looked a little like this. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimcAZt8u3EhGlqJOZkFF0JKs5Jmq8iuY2CDrHxGYCPQXqu5vhCK2Y4iuFC_ISgX-K4f18YNmGIcjs5POt66YpB5o6PZrzQRVo9mr-XHbKFsN5vQY4_8_rGOa1clZP3E6zYi9CJ7EgS_9U/s1600/Matt_Joe_Mike+1974.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="448" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimcAZt8u3EhGlqJOZkFF0JKs5Jmq8iuY2CDrHxGYCPQXqu5vhCK2Y4iuFC_ISgX-K4f18YNmGIcjs5POt66YpB5o6PZrzQRVo9mr-XHbKFsN5vQY4_8_rGOa1clZP3E6zYi9CJ7EgS_9U/s640/Matt_Joe_Mike+1974.jpg" width="640" /></a></div>
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<span class="Apple-style-span" style="font-family: Verdana;"><br /></span></div>
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<span class="Apple-style-span" style="font-family: Verdana;">From right to left you have the handsome one (AKA your author), my brother Joe (who by the look of the white tie and shirt was celebrating his First Holy Communion), and the "Instigator" as my mom called him or the "Mastermind" as I preferred. His name is Mike.</span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span><span class="Apple-style-span" style="font-family: Verdana;">Back then, our mailman didn't deliver mail from the comfort of his truck. He walked. </span><span class="Apple-style-span" style="font-family: Verdana;">I used to sit outside and watch him saunter up and down the street in his shorts and tennis shoes and think he had a pretty good gig. He was outside in sunny </span><span class="Apple-style-span" style="font-family: Verdana;">Southern California where the temperature rarely dipped below a chilly</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> 75<span class="Apple-style-span" style="border-collapse: collapse; line-height: 19px;">°F</span></span><span class="Apple-style-span" style="font-family: Verdana;">, had a good tan, and always seemed to be in a good mood. I</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">n those days there was no FedEx, no UPS, no email, and no texting, so not much competition. If you wanted to reach someone outside your local area you either had to drive there, call them (<i>from a phone attached to your kitchen wall - - gasp!</i>) or send a letter. So</span><span class="Apple-style-span" style="font-family: Verdana;">, business was good and our mailman was in no hurry. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">I almost forgot one little detail. In our neighborhood, the</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> mail wasn't delivered at the street. We had a handy slot in the fron</span><span class="Apple-style-span" style="font-family: Verdana;">t door so each day he had to come up our walkway and slide the mail inside the house. My mom loved it because she didn't have to go out and brave the mean streets of So. Cal. suburbia. And, </span><span class="Apple-style-span" style="font-family: Verdana;">three <span class="Apple-style-span" style="font-family: Verdana;">mischievous</span><span class="Apple-style-span" style="font-family: Verdana;"> boys loved it because it spurred an idea on boring summer day. </span></span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">For my older brother Bill's birthday I scrapped together whatever spare change I could find and purchased the finest Batman squirt gun I could afford. As you can see below, it was a thing of beauty. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg81a8xgKI7uQrJeMq7yTwl8smGOO_LhNYOxk7nT5N9Tc45nBr19hXLv1m9LTXZChld3nldcxFk2SscpsDJacS0gfEvtdRuheFgtyo2ZdPNBzf9GBbVHU4iEJD2OFZdpgwImVSe2iN0nSw/s1600/Batman+Squirt+Gun.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg81a8xgKI7uQrJeMq7yTwl8smGOO_LhNYOxk7nT5N9Tc45nBr19hXLv1m9LTXZChld3nldcxFk2SscpsDJacS0gfEvtdRuheFgtyo2ZdPNBzf9GBbVHU4iEJD2OFZdpgwImVSe2iN0nSw/s320/Batman+Squirt+Gun.jpg" width="320" /></a></div>
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<span class="Apple-style-span" style="font-family: Verdana;">To this day, I swear I had no intention of using it, but as it sat, pristine in its shrink wrap, I could not resist. </span><span class="Apple-style-span" style="font-family: Verdana;">Keep in mind this was summer so any chance to cool off was taken seriously. Sure, we could have dove in the pool or ran through the sprinklers, but for a young dude, the chance to be armed with the most technologically advanced squirt gun in town, could not go to waste. Plus, </span><span class="Apple-style-span" style="font-family: Verdana;">the "Mastermind" had a grand plan. It went a little like this... </span><span class="Apple-style-span" style="font-family: Verdana;"> </span><span class="Apple-style-span" style="font-family: Verdana;"> </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">The next day as my brothers gathered and filled up all the squirt guns they could find, I was to be the "scout" and keep watch out the front window. When our mailman entered the neighborhood I was to give the sign. Just then, we would quietly sneak out so mom didn't hear and hide out in the bushes near the front door. There we would lie in wait until he came up our walkway so we could soak him! As the "Mastermind" explained it with an extra bit of drama, I had visions of John Wayne prepping for a secret World War II mission. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">I think I was in scout position at least an hour early. As my brothers scoured the garage, toy boxes, and cabinet drawers for squirt guns, I sat, resolute. As the morning rolled on, the squirt guns were prepared and the target was spotted slowly walking across the street. We moved into position and waited. At just the right time, we popped up, and soaked him, half his mail bag and ran around to the back of the house to safety. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span><span class="Apple-style-span" style="font-family: Verdana;">He took it like a man and did not say anything to my mom, but she saw it all go down out the window. So the next day, after Mom duly explained that this was not something "nice boys do," we waited outside to apologize. As our mailman approached the house we readied our apology, but just then he pulled out a much nicer squirt gun and surprised us with a dose of our own medicine. We stood there soaked and realized we had been duped by a better foe.</span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">From that day forward, and throughout that whole summer, we launched surprise attack after surprise attack on our mailman. Sometimes we were the victors and sometimes we were left soaking wet. It didn't matter if our mail had to be laid out to dry before Dad came home, we were having a ball. The next summer, the "Mastermind" moved onto another crazy plan and we left our mailman alone. He continued his saunter up and down the street at ease without fear of battle. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">It has almost been four decades since I paid much attention to mail delivery. Over time our family moved to a new house, my brothers and I got older, and we lost interest in squirt guns. Life moved on. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">These days, we live on the East Coast, our mailman drives a truck, and probably would not take too kindly to a squirt gun sneak attack. I no longer spend my summer days sitting watch for him to enter the neighborhood because the only thing he seems to deliver me are bills, credit card applications, and advertisements which quickly find themselves in the recycle bin. If there is </span><span class="Apple-style-span" style="font-family: Verdana;">anything important to be delivered, my friends at FedEx or UPS visit the house.</span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">So while I don't stand watch any longer, I do think about my old mailman every other Saturday morning. </span><span class="Apple-style-span" style="font-family: Verdana;">Like those days from long ago, our guy walks right up to the door and delivers the important information for the day. Unlike the past, he doesn't hold letters from a distant friend or even birthday cards with cash from grandma. No, his delivery is much more important. These two boxes come </span><span class="Apple-style-span" style="font-family: Verdana;">from a pharmacy and contain the necessities for our girls' treatment. There are a few IV bags, a few adapters, some water for injection, a couple tubing sets, and a cooler filled with something that looks like this...</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcY8tAgpBw9mTG7oZXlo2kTSUB7u4rwH4wQIgLAq3y7YcdCuGVT8kExFAVZQFxRES8H28Ii_PL_JFDfAxt4pGrwTkcJy7FXSsV6rCPYusms9sIctQmBaXig3V6diT1cR2xw2M7kmEBoOg/s1600/IMG_8295.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcY8tAgpBw9mTG7oZXlo2kTSUB7u4rwH4wQIgLAq3y7YcdCuGVT8kExFAVZQFxRES8H28Ii_PL_JFDfAxt4pGrwTkcJy7FXSsV6rCPYusms9sIctQmBaXig3V6diT1cR2xw2M7kmEBoOg/s640/IMG_8295.JPG" width="640" /></a></div>
<span class="Apple-style-span" style="font-family: Verdana;"> </span><span class="Apple-style-span" style="font-family: Verdana;"> </span></div>
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<span class="Apple-style-span" style="font-family: Verdana;"><span class="Apple-style-span" style="font-family: Verdana;">Yep, it's Lumizyme delivery time!</span></span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">I rush to meet our FedEx or UPS man at the door each time with a big thank you and a sigh of relief. It may sound strange to you, but despite over a year of bi-weekly deliveries, I am still not comfortable until I've signed for those cartons, unpacked the supplies and placed the Lumizyme vials in the fridge. Only then I know that our girls will once again get the treatment that keeps them moving and we can go on with our weekend. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">As the vials need to stay cold, I am on the watch to make sure everything goes well. The majority of the time</span><span class="Apple-style-span" style="font-family: Verdana;">, the delivery is like clockwork, but when the weather wreaks havoc, things can get a bit crazy. We've had to cancel plans because deliveries were a few hours late, we've had to meet the UPS truck on his route because he forgot the second box, and once we had to wait nervously for two days until a winter storm's wrath allowed for delivery. We've seen the effects of missing a treatment only once and want to do our best to stay on top of it. You should see Donna work the UPS phone lines...impressive!</span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">Looking back, the 1970's in Southern California seemed idyllic. It was a slower and simpler time, at least for me and my brothers and our friend that walked the streets with a mailbag over his shoulder. I have no idea where our old mailman is these days. He was a good man and I hope he is retired, healthy, and living in some warm climate far away from little hooligans with squirt guns. If I did get a chance to connect with him I would say thanks not just for the fun we had that summer day, but for doing his job. While we did not seem to care what was in his bag, I'm sure someone did. I'm sure back then he delivered pills to a nice old lady's house or important supplies to someone's child. </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">A long time ago, </span><span class="Apple-style-span" style="font-family: Verdana;">I could not have imagined that one day I would step foot in New York City. Also, I could not imagine I would be writing a blog about my family. And finally, I could not imagine I would once again be so excited to see a postman deliver something to the house. Sure, these days he may not wear a blue uniform with USPS on the front, but rather with FedEx or UPS. In the end however, it doesn't matter because... </span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;"></span><br />
<div style="font-family: Arial; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: center;">
<span class="Apple-style-span" style="font-family: Verdana;"><span class="Apple-style-span" style="font-family: Verdana;"><i>Neither snow nor rain nor heat nor <u>squirt gun attacks</u> stays these </i></span></span></div>
<div style="font-family: Arial; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; text-align: center;">
<span class="Apple-style-span" style="font-family: Verdana;"><span class="Apple-style-span" style="font-family: Verdana;"><i>couriers from the swift completion of their appointed rounds.</i></span></span></div>
<span class="Apple-style-span" style="font-family: Verdana;"><i><br /></i></span>
<span class="Apple-style-span" style="font-family: Verdana;">Great work gents! Great work!</span><br />
<span class="Apple-style-span" style="font-family: Verdana;"><br /></span>
<span class="Apple-style-span" style="font-family: Verdana;">Credit to: The Beatles, “Mr.
Postman”</span></div>
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<span style="font-family: Verdana;"> <i>Song originally by The Marvelettes<span class="Apple-style-span" style="font-size: small;"><o:p></o:p></span></i></span></div>
<!--EndFragment-->Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1403927290529132193.post-27191196961370663542013-01-05T18:03:00.000-05:002013-01-05T18:03:29.455-05:00I Saw The Light<!--[if gte mso 9]><xml>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>It was late last night <br />I was feeling something wasn't right <br />There was not another soul in sight <br />Only you, only you <br />Then you gazed up at me and the answer was plain to see <br />'Cause I saw the light in your eyes</i><br /><br />When I opened the door that morning I just knew this was going to be perfect. I had talked to Levi on the phone a few weeks before and was very impressed by his professionalism, but more importantly, his true interest and caring about our two girls and our family. I felt this project was an opportunity for him to do much more than just take a few photos. This project was an opportunity for him to use all his skills to capture a moment which would be timeless. It was an opportunity to sit, listen, share, and photograph two girls in such a way that the light that shines from them could be seen by everyone that walked in company's door. I knew this was going to be perfect because, just as I see the light in my kids, <i>I Saw The Light</i> in Levi.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few months ago I received a call from one of the Patient Advocates at Amicus Therapeutics. The company would be celebrating their 10th anniversary soon and wanted to know if we were open to Emma and Maddie being photographed for their new "Living In The Light" portraiture exhibit. The company would be moving to a larger facility and was developing a series of patient photographs to be hung in the atrium and throughout the building to inform and inspire employees and visitors. The unique thing was that the photo display would come with a plaque describing each person's story and experience with their disease. This way, the viewer could gain a more complete view into each person's life and hopefully see the light they bring to the world. The idea was intriguing so after a quick check with the girls we said "Yes!"</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Levi was kind enough to take the time for a couple phone calls prior to his visit so we could get to know him a bit and prepare the girls with the right clothes and color combinations. Speaking with him also allowed us to better understand the project and his approach to working with the girls. Having any stranger in your house can be unsettling, but having one that is also speaking directly with your children about their lives can cause even more discord. Fortunately, because of our trust with the Amicus team and Levi's gentle and informative manner, all fears were set aside.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When photo day arrived and Donna and the girls were scurrying about fixing hair, finishing make-up, and finding the perfect outfits, I did what I do best. I stayed out of the way. If there is one thing I've learned with raising two girls, it is best to stay clear of that storm. They always end up looking great and I am much more skilled at doing dishes, vacuuming carpet, and moving things from one room to another. So, when Levi arrived, the house was clean, the girls looked great, and we were ready to go.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">From the moment he walked in, Levi connected with the girls. They were talking, laughing, and most of all smiling. His goal was not to photograph them in some scenic background, but rather to capture their light within their daily environment. So, before we knew it, our den and living room became photo studios. Over the next several hours they moved from one room to the next with ease, sharing stories and laughter along the way. We learned about his background, he learned about ours, and somewhere along the way I believe the girls' spirit impacted him and his comforted them.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We finished off the day by sitting around the kitchen table. He brought along a notebook and recorder in order to ensure our girls' story and our family's story was captured in the same precision as his photos. We began with a brief overview of Maddie's diagnosis and walked the long and winding road until today. He wanted to understand a patient's perspective, a sibling's perspective, and a parent's perspective. While it was easy to outline the "what" of their story, dates and facts, it became a bit more interesting as he continued to ask questions like, "How did you feel about that?" From there he learned about everyone's perspective and how much impact one disease had on one family. </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">By the end of the session sunset had filled the sky and nightfall was on its way. We walked Levi out to his car and helped him pack up. We weren't sure what to expect when the first request came in, but by the end of the day we felt connected to each other. The morning's handshake had been replaced by hugs and a commitment to represent our family's light in the best manner possible. We started the day as strangers, but left as friends.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few weeks would pass until the Amicus reception and portraiture exhibit opening would be scheduled. After we received the invite and marked it on our calendar, I received a call from Levi with one last request. In doing his research, he had read several posts from this blog, came across one with Maddie singing the song Defying Gravity (<a href="http://maddiesmission.blogspot.com/2012/06/defying-gravity.html">http://maddiesmission.blogspot.com/2012/06/defying-gravity.html</a>), and thought it would be the perfect message for the Amicus employees and special guests attending the event. Maddie happily agreed and prepared with excitement.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When the day arrived, we loaded into the car and drove up to Cranbury, NJ. As soon as we entered the building we were greeted by Amicus leaders, some friends from the Pompe community, and a series of wonderful photos from patients with Fabry, Gaucher, Maroteaux-Lamy Syndrome (MPS VI), Mucopolysaccharidosis (MPS) Type I, and of course Pompe. As expected, each photo was accompanied by a story. As I read each story I was impacted by the detail, the sensitivity, and the light. These were stories of individuals, of children, of adults, and of families all sharing the same trait - living with rare disease. Each was powerful and very well done.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Soon the event began, and after a short introduction by Amicus management, and a greeting from the New Jersey Lt. Governor, Maddie took the "stage". Without hesitation and without fear, she took the microphone, walked to the center of the stage and began to sing. The room was silent as this little girl had her light shine through the words of a song and a beautiful voice. So proud...</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The day ended with a tour of the new facility and a few minutes to speak with friends. All in all it was a great success and we were honored to attend. There are times I wonder how we ended up where we are and why my girls faces are on a pharmaceutical company's website. However, there are others when I realize how blessed we are to have met so many wonderful people. One of these is Levi, whose mission is explained in his quote below.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>“In that way, each of these photographs represents a privileged moment, a time when I was fortunate enough to notice and receive the light another person was offering. In my eyes, that is when the magic of photography comes to life, when we are given the opportunity to witness a single moment – precious and full of wonder – and then show it to others.” Levi George Gershkowitz </i> </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Thank you Levi for sharing your talents with our family and thank you to Amicus for supporting such an honorable project. Well done! Well done!! </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Please check out Levi's photos and Maddie and Emma's "Patient Portrait" story on the Amicus Therapeutics website. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">You can access the main page and see one of their photos at <a href="http://amicusrx.com/default.aspx">http://amicusrx.com/default.aspx</a>, a photo of Maddie at <a href="http://amicusrx.com/portraits.aspx">http://amicusrx.com/portraits.aspx</a> and their complete story at <a href="http://amicusrx.com/ppMaddie.aspx">http://amicusrx.com/ppMaddie.aspx</a>.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I also highly recommend you visit Levi's web site at </span><a href="http://www.levigersh.com/" style="font-family: Verdana, sans-serif;">http://www.levigersh.com/</a> to<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> see additional patient photos and stories. By doing so, I am confident you will hear their voice telling you...</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Can't you see the light in my eyes</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">All the best,</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Matt</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: Todd Rundgren, "I Saw The Light"</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Here are some additional photos we took at the event.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpwoybOa_jAR7sotDdQW8CsL6w4sG5jIVgvgnaEYbziifl2J5lw0Ndv-LZ6E7YnNkq7fvn2H4FkZPeBSB_ze3yv33lJf_qoswpTSt-8HktJoebXfa12K6qeiLqCkuTL-pKG8cvcz4cezc/s1600/Levi.Emma.Amicus.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpwoybOa_jAR7sotDdQW8CsL6w4sG5jIVgvgnaEYbziifl2J5lw0Ndv-LZ6E7YnNkq7fvn2H4FkZPeBSB_ze3yv33lJf_qoswpTSt-8HktJoebXfa12K6qeiLqCkuTL-pKG8cvcz4cezc/s640/Levi.Emma.Amicus.JPG" width="480" /></a></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Emma and Levi showing off their portrait.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglJ0n5tvGWEl7-2zyKg_e3uLhet7zukOPpc4-8a8yPjSfTWb_F4Uj0IrsYMWfZ0gV9dyN0Db2ymr9eUhpmkxb-vk_UXUKoGxUUFf2qcrn29K1esvFJ5xNEeMubkUMG2P-XP9OBmp9vDWU/s1600/Amicus1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglJ0n5tvGWEl7-2zyKg_e3uLhet7zukOPpc4-8a8yPjSfTWb_F4Uj0IrsYMWfZ0gV9dyN0Db2ymr9eUhpmkxb-vk_UXUKoGxUUFf2qcrn29K1esvFJ5xNEeMubkUMG2P-XP9OBmp9vDWU/s400/Amicus1.JPG" width="400" /></a></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Our family with a few of our Pompe friends</span></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1403927290529132193.post-91312729664899638032012-12-29T23:52:00.000-05:002012-12-29T23:52:37.128-05:00Every Breath You Take<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Every breath you take </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Every move you make </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Every bond you break </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Every step you take </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>I'll be watching you. </i></span><br />
<span class="Apple-style-span"><i><br /></i></span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Every single day </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Every word you say </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Every game you play </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Every night you stay </i></span><br />
<span class="Apple-style-span"><span style="font-family: Verdana, sans-serif;"><i>I'll be watching you.</i> </span></span><br />
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<span class="Apple-style-span"><span style="font-family: Verdana, sans-serif;">Before we had a chance to Google Pompe disease or enzyme replacement therapy, we were introduced to the word Pulmonologist. Now, I consider myself a well-educated man and I admit to a somewhat strange interest in the meaning of words so when these were tossed out I thought for sure I could use some grammar tricks and return with a definition in minutes. However, like many times to come I would discover that I had just entered a world which was not designed for quick answers and simple solutions. We had entered a new world we never knew existed nor expected to discover. While others my age would be focusing on their careers or favorite sports team, I would soon find myself very interested in something I thought was automatic to the rest of us…breathing. I would soon learn that I needed to add the words Pompe and Pulmonologist to my vocabulary because they would have a big impact on every breath Emma and Maddie would take. </span></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I clearly recall that day at CHOP when we first learned that Pompe disease can impact the diaphragm, a muscle used for breathing. I came prepared, like all meetings, with pen and paper ready to write my notes and highlight my action items. But, as the doctors began to explain, I could not write it down. I was stunned. They told us that without proper treatment and diligent follow-ups, Pompe patients could experience a loss of breath after exercise, difficulty breathing when sleeping, and a tendency to develop more severe respiratory infections. In many cases, patients will require the use of a BiPAP breathing device at night. In the worst case, patients could experience respiratory failure, requiring a tracheotomy and the permanent use of a ventilator to help them breathe.</span><br />
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<span style="font-family: Verdana, sans-serif;">My first response was to sit in disbelief and challenge the doctor’s logic, but thankfully, before I made a fool of myself, my Dad's problem solving style quickly set in. "So, what do we need to do,” I asked. The doctors then explained the importance of staying aware of morning headaches and tiredness due to a lack of oxygen, stacking pillows to keep one’s head up at night to improve breathing, getting the flu vaccine early each year to reduce respiratory infections, about and most important, the necessity to have the girls see someone called a Pulmonologist. </span><br />
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<span style="font-family: Verdana, sans-serif;">Since I was a kid, I was never afraid to be the one to ask the "stupid question.” I am not sure if it was because I was more inquisitive than the next kid or just a bit slow on the uptake. Either way, I told myself I was asking the questions others were afraid to ask and never hesitated even if I knew my teacher would give me that "are you serious?" look. Over time I am a bit more careful here as I learned that in the working world despite your boss’s statement “there are no dumb questions”, there are. Regardless of my hesitation, I was faced with a term I did not know so threw it out. “What’s a Pulmonologist?” Fortunately, the CHOP team did not give me that "are you serious" look, but rather explained that these doctors specialize in all things respiratory and would be responsible for monitoring my daughter's breathing performance through annual testing. </span><br />
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<span style="font-family: Verdana, sans-serif;">Since that initial meeting we’ve met a few Pulmonologists across the U.S. and learned more about breathing than I cared to learn. We've also watched our girls undergo breathing test after breathing test while sitting and lying down. They’ve breathed into funny looking machines, sat in science fiction looking air-tight chambers, and competed with each other to see who could have the best results. We’ve also sat quietly by their beds at night listening to them sleep and prayed that they would never have to worry about something that is automatic to the rest of us…breathing.</span><br />
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<span style="font-family: Verdana, sans-serif;">A couple weeks ago, we had our 2012 visit to the Pulmonology Lab. This appointment was clearly much simpler than our first, even routine. As the girls and I walked down the familiar white hallway at CHOP, passed the posters of medical inhalers, and found our seats, it was all good. There was no nervousness, no anxiety, and no need for my stupid questions. We were comfortable in this world, knew what to expect, and were confident in another great result. </span><br />
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<span style="font-family: Verdana, sans-serif;">As there were two doctors on staff that morning, the girls were split up for speed. Each would undergo testing while sitting up and while supine (lying down). Each would run through the same schedule they had done many times before and each would do their best because we all understood the importance of the results. One of CHOP’s staff called this week to tell us that they reviewed the results and they were “great”! The results show they are either stable or improving a bit since last time. The combination of enzyme replacement therapy, diet, exercise, and a little thing called luck seem to be keeping things in check. </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Looking back it is funny to think of where we started from and where we are today. With attentiveness, education, and hard work, the girls are doing well. However, we know that Pompe is a progressive muscle disease which means that past success does not mean we can ignore the issue. We all need to remain vigilant, educated on new advancements, and on top of our regular visits to the doctors. Nothing in life is a sure thing, but with the right planning and “can do” attitude, our girls will be just fine. </span><br />
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<span style="font-family: Verdana, sans-serif;">Before I know it we'll be back at the Pulmonology Lab and I'll be peeping over the doctor's shoulder as he completes his tests, hoping to see positive results. Whether the results are perfect or just a bit less than we expected, I'll be there by their side because...</span><br />
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<i><span style="font-family: Verdana, sans-serif; mso-bidi-font-family: Verdana; mso-bidi-font-size: 18.0pt;">Every breath you take</span></i><span style="mso-bidi-font-family: Arial; mso-bidi-font-size: 18.0pt;"><o:p></o:p></span><br />
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<i><span style="mso-bidi-font-family: Verdana; mso-bidi-font-size: 18.0pt;"><span style="font-family: Verdana, sans-serif;">Every move you make <o:p></o:p></span></span></i></div>
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<i><span style="mso-bidi-font-family: Verdana; mso-bidi-font-size: 18.0pt;"><span style="font-family: Verdana, sans-serif;">I'll be watching you.<o:p></o:p></span></span></i></div>
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<span style="mso-bidi-font-family: Verdana; mso-bidi-font-size: 18.0pt;"><span style="font-family: Verdana, sans-serif;"><span style="font-family: 'Verdana','sans-serif'; mso-bidi-font-family: Verdana; mso-bidi-font-size: 18.0pt;">Breathe on!</span><span style="font-family: 'Verdana','sans-serif';"><o:p></o:p></span></span><br />
</span><span style="font-family: Verdana, sans-serif; mso-bidi-font-family: Verdana; mso-bidi-font-size: 18.0pt;">Matt</span><span style="mso-bidi-font-family: Arial; mso-bidi-font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">Credit to: The Police, "Every Breath You Take"<span style="font-style: italic;"><o:p></o:p></span></span></div>
<!--EndFragment-->Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1403927290529132193.post-24147858165794736852012-11-03T21:48:00.000-04:002012-11-03T21:48:24.415-04:00Let it Be<span style="font-family: Verdana, sans-serif;"><em>When I find myself in times of trouble, Mother Mary comes to me</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Speaking words of wisdom, let it be</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>And in my hour of darkness she is standing right in front of me</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Speaking words of wisdom, let it be</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Let it be, let it be, let it be, let it be</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Whisper words of wisdom, let it be</em></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">To some it was just a spreadsheet, but to me it was a thing of beauty. Spreadsheets only have numbers and calculations. This had names, dates, times, events, travel details, all in color. I’m not talking just any color. There was a rainbow of colors to separate one item from the next. After all, for a trip like this, the standard white background would not do. This was the Olympics and if I was going to be the planner, I was going to do it in style.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Over the years I’ve met a few people who claimed to be experts in organization. They’ve held seminars, written books, and sold recordings. They’ve inspired millions of the organizationally challenged, but none could hold a candle to my mentor. You see, my father was the master. When the others were promoting their skills for money, my dad was quietly passing his secrets to his kids. When grown men wondered how to organize file cabinets, I did it with ease. When others froze in the calendar aisle of office supply stores, I created my own. And, when I needed to plan a vacation the pre-Excel color coded organizer was there as a reference. You see when my sister graduated from medical school back in the day my dad had our trip detailed to the minute. Each family was color coordinated and each event carefully defined. Scoff as they might, this man got us there and back on time, on budget, and as planned. It was a thing of beauty.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As we began to plan for our summer trip to London, I jumped at the chance to organize the travel details and my friend took on the challenge of the “one thing”. The breakdown was simple. I was to record all the details around travel, events, reservations, and prices while he developed something special. The “one thing” was the opportunity for each of us to squeeze in something we wanted to see, do, or experience while we were in London. There were no limits and only one ground rule. No matter how wacky it sounded, we would all make time to participate . There would be no schedule or clock, just the opportunity for magic and memories. What I did not realize until later was that while the planning was necessary, sometimes magic can only happen when you Let it Be.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Over time, each of us chose something different. The list included the London Eye, Buckingham Palace, Shakespeare’s Globe Theatre, and even swimming at this crazy pond at Hampstead Heath. For me the choice was simple. If you’ve read this blog for any period of time you know I like music and love the Beatles. While my musical taste is quite eclectic, they just seem to spark my creativity. As such, my “one” choice was simple…Abbey Road. For those who may not know, Abbey Road is the location of Apple Studios (not the Steve Jobs version, but the Beatles version) where the Beatles recorded and the name of my favorite Beatles album. The cover of the album is a simple photo of the group crossing a street. While I don’t believe they understood the importance at the time, the photo has become iconic. It is so much so that people from around the world travel to the site just to walk the same steps and recreate a moment.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I don’t recall which day it was that we decided to fit it in, but it came together perfectly. We had a free afternoon (thanks to my excellent scheduling – Ha!) on the way to a soccer match and took a subway detour. When we came up from the tube station I began to feel the magic. There were people of all shapes and sizes sharing what appeared to be a strange pilgrimage, just to cross a street. As we walked around the corner on that blustery day, the famous crosswalk came into view with the studio just behind. It may not have been special to everyone in our group, but to me it was cool. It is a strange feeling when after looking at a photo for many years, you find yourself next to it. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Within minutes cameras were out and my family was ready to cross. As our friend waited for traffic to clear Emma removed her shoes, to recreate the Paul McCartney pose, and we readied ourselves. Amongst the honking horns of delivery vehicles and taxis, we crossed, stopped halfway, took a few photos, and ran to safety on the other side. We then stopped by the studio to take a photo, write on the wall, meet a few people, and share a few stories. Then, just like that, it was time to go but before we got too far, our friend pulled out a sign and handed it to Donna and I to hold up in the street. The written message was in bold letters and clear as could be…Let it Be.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As we again began to leave, a gentleman asked Emma to take a photo of him and his son on the crosswalk. Once that was done Donna started up a conversation and found out that this man was from the same area in California as her. After minutes of small talk about towns and restaurants he asked if we needed access to more Olympic tickets. Sure we said, as long as it was legal and not crazy expensive. It went something like, at 8:30 AM, go to Westminster tube stop, enter x hotel, go to x floor, find x room, and line up. Each day x offered a series of tickets (at face value!) which its government was not using for the day. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It sounded a bit crazy to me, but then again it wasn’t on my spreadsheet. The great part was it immediately added adventure and actually worked! For a few days our group acquired tickets to events we had given up on months before. Each day a visit to x hotel on x floor took place and we were able to pass on a bit more of Olympic magic to the kids. I can’t calculate the odds of us being on the right corner and at the right time, to get that tip? I can’t tell you because it can’t be calculated on a spreadsheet – with or without color. All I know is it brought smiles to the faces of our kids and left us with a story that they will tell long after we’re gone. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Later that evening as we finally took our seats at Wembley Stadium, I looked over to my kids, and smiled. I was glad that all our planning had allowed us to be there on time, on budget, and as planned. However, I was happier that my friend took charge, created the “one thing”, and allowed each of us to experience a bit of magic throughout our vacation. While some things can be scheduled, organized, and planned, sometimes you just need to set aside your calendars, set aside your stress, open your mind, and…</span><br />
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<em><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Let it be</span></em><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">All the best,</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Matt</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: The Beatles, “Let it Be”</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Here are some photos from our day at Abbey Road which you might enjoy.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The kids in front of Abbey Road Studios</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The famous crosswalk</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A simple message </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> to be shared...</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> and shared once again...</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A memory left behind</span></div>
<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1403927290529132193.post-17732805750517415872012-10-21T20:27:00.000-04:002012-10-21T20:27:37.382-04:00Homecoming of The Boys of Fall<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>When I feel that chill, smell that fresh cut grass<o:p></o:p></em></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>I'm back in my helmet, cleats, and shoulder pads<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>Standin' in the huddle listenin' to the call<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>Fans goin' crazy for the boys of fall<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>They didn't let just anybody in that club<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>Took every ounce of heart and sweat and blood<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>To get to wear those game day jerseys down the hall<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>The kings of the school, man, we're the boys of fall<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>Well it's, turn and face the stars and stripes<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>It's fightin' back them butterflies<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>It's call it in the air alright yes sir we want the ball<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>And it's knockin' heads and talkin' trash<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>It's slingin' mud and dirt and grass<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>It's I got your number, I got your back<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>When your back's against the wall<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>You mess with one man, you got us all<o:p></o:p></em></span></div>
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<em><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The boys of fall</span><span class="Apple-style-span" style="font-family: Verdana; font-size: 11pt;"><o:p></o:p></span></em></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few years ago Carter came to us and said he wanted to play football. I quickly recalled my middle school days at St. Angela's playing flag and pictured a field covered with nice catholic boys wearing matching shorts and t-shirts. "Not that kind of football,” he said. "I want to play real football, the kind where you wear helmets and actually tackle kids." I wasn't so sure Carter was ready for the roughness of football, but since competitive chess was not an option I agreed.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few enjoyable years of Pop Warner at Marsh Creek were followed by a year of middle school football and a year of Freshman football. Freshman football at Carter's high school means only freshman play (no bigger kids sneaking in) and all of them stay safely clear of the man-child players who could be seen frequenting the varsity field. Freshman football was controlled, designed for fun, organized for learning, and a testing ground for the big time. Lots of boys play Freshman ball for those very reasons. However, when the idea of graduating to JV to play scout team vs. boys that weigh 250 pounds and squat 3-4 times your weight enters their minds, they decide to pursue their passion in one of the many other sports the school has to offer. Not Carter. He loved it too much. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As a sophomore at D East, unless you are a stellar player, you play JV. You practice with the varsity, act as scout team, and play games on Monday afternoons. For those that don’t know, scout team means you run the opponent's offense and defense against a fired up varsity team who goes full force. This is not flag football or even rough touch; it is tackle football with a vengeance. As a tight end or linebacker, Carter frequently found himself eye to eye with his varsity counterparts who only saw the opponent’s jersey and held a desire to prove to his coaches that he was ready for Friday night lights. Scout team brings no glory, but is a rite of passage for each player. There is no sympathy from the older kids, but for those who play their part there is one thing more important...respect. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Most evenings I pick up Carter from school about eleven hours after he's left in the morning. The somewhat quiet, non-morning boy who left the house with combed hair, pressed shirts, and lunch in hand is not the same one I pick up in the evening. The one standing outside the locker room is donned in filthy practice pants, a soaked shirt, tussled hair, and a giant smile. After he drops his bags in the car, flops into seat, and asks what's for dinner, I ask about practice. He always starts with the story of that day's scout team. He would talk of how he caught a pass and one kid "destroyed him" and how he tried to tackle another and "took him down". The details go on and on. While we live five minutes from school, on those evenings I wish we could drive for hours. There are few things better than listening to your son as he is maturing right in front of you.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">During the high school football season, few things are more important or more exciting than Homecoming week. This is the time when alumni return to the stands and former players walk the sidelines with their teammates. It is a time when the school and its town come together around a football field to celebrate the fall and reinforce tradition. During this week</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">, the seniors nominate girls to the Homecoming Court and then choose a Queen. Rather unexpectedly Emma said, “I’d like to be on the Homecoming Court”. She ran, was nominated and we were excited for her. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Homecoming week started with the Homecoming game itself. This year our high school team is doing quite well, so by half time the game was under control, but there was still electricity in the air. It was time for the Homecoming Court to be escorted across the field. When the girls and their escorts lined up I could faintly see Emma until her name was announced. There she was, walking with her head high, confidence in her eyes, and a giant smile on her face. I was in the stands with my camera flashing and wondering how lucky I was to see both my son and daughter on the same field that special night.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Our team went on to win the game and the rest of Homecoming week was underway. Our kids had a great time at the dance, the annual bonfire, and the pep rally. As a member of the Homecoming Court, Emma participated in the bonfire and pep rally helping to lead the school in cheers. They didn’t allow this old guy to attend, but according to Emma and Carter, it was awesome.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Last Friday night Homecoming week came to a close with the annual rivalry game of D East (us) vs. D West. We arrived extra early, grabbed our seats, and watched the crowd of 7,000 slowly assemble. The action started fast with 14 points for D East followed by a fast 14 for D West. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As the game continued we saw lightning off in the distance and rumblings that it was headed our way. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As the second quarter rolled into the third, D East extended their lead, and the weather continued to roll. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">At the end of the third quarter a delay was called. No matter how much everyone wanted the game to continue, safety was key so the stands were cleared and people headed to their cars. While others lined up to head home, we just couldn’t. We had hope the game would somehow continue and wanted to be there rooting on our son if it did. Suddenly, we heard they were playing and raced back in time to watch the last few minutes with a small crowd of students and parents. Standing in the rain and listening to the kids celebrate by singing the song "Hey Baby" seemed like the perfect ending to a perfect week. But, it appeared I had missed a bit of magic.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When we got home Carter told us that after the decision was taken to restart the game, the teams walked out of the locker rooms and onto the field in silence. Since the security staff had cleared everyone from the stadium, all 7,000 were gone. With nothing but the sound of rain droplets against helmets to break the silence, the boys walked out as one. All season long their coach had preached the importance of their team as family and due to a strange set of circumstances, here they were during one of the biggest games, alone but together as brothers. Everyone they needed was there.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">While the symbolism of that moment may play more to me than others, I just love that moment. Just as our family and many others have faced the silence of the unexpected, but rallied together, these boys did the same. It did not matter that the boys </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">came from different backgrounds or different faiths, when it was necessary, they stood together. Nothing had to be said because they already knew that despite the challenge...</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>It's I got your number, I got your back<o:p></o:p></em></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><em>When your back's against the wall</em></span><br />
<em><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">You mess with one man, you got us all</span></em><br />
<em><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The boys of fall</span></em><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">1, 2, 3...FAMILY!</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Matt</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: Kenny Chesney, "The Boys of Fall"</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If you haven’t had the opportunity to see "The Boys of Fall" video, I recommend you spend a few minutes and check it out the following link. With a little luck, it may leave you with the same level of inspiration it left me.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><a href="http://www.youtube.com/watch?v=AlXDo5WhQXI">http://www.youtube.com/watch?v=AlXDo5WhQXI</a></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Here are a few pictures of Homecoming which we hope you’ll enjoy.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Carter #38:</span></div>
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Emma walking across the field</div>
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One proud girl</div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The Boys of Fall ... Post Game Celebration</span></div>
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<!--EndFragment-->Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1403927290529132193.post-12406275459800907012012-10-06T13:47:00.000-04:002012-10-06T13:48:27.609-04:00She's A Rainbow<span style="font-family: Verdana, sans-serif;"><em>She comes in colors everywhere; <br />She combs her hair <br />She's like a rainbow <br />Coming colors in the air <br />Oh, everywhere <br />She comes in colors </em></span><br />
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<span style="font-family: Verdana, sans-serif;"><em>Have you seen her dressed in blue<br />See the sky in front of you <br />And her face is like a sail <br />Speck of white so fair and pale <br />Have you seen the lady fairer</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>She comes in colors everywhere; <br />She combs her hair <br />She's like a rainbow <br />Coming colors in the air <br />Oh, everywhere <br />She comes in colors </em></span><br />
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<span style="font-family: Verdana, sans-serif;">Does she always run that way?</span><br />
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<span style="font-family: Verdana, sans-serif;">It seemed like an odd question, but then again everything about that day was odd. There I was, standing in the colorless halls of the Neuromuscular Clinic at Children’s Hospital of Philadelphia, listening to doctors and wondering how fast I could escape back to our quiet life. My logical side told me there was no doubt this was the right place to be, but somehow it still did not make sense. Somehow our lives took a detour we weren’t expecting and I was confused. </span><br />
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<span style="font-family: Verdana, sans-serif;">I was jarred when it came once again, "Does she always run that way?” </span><br />
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<span style="font-family: Verdana, sans-serif;">His question was clearly an indication that something was not right and I was afraid to answer. Fortunately, Donna spoke up and told the doctor that it was just the way Maddie runs and asked if something was wrong. He didn't have much to say, just noted something down and moved on to the next test. Once he was done, he laid out our situation. There were a couple things to consider, but Pompe Disease was the most likely candidate and later proved to be the diagnosis. </span><br />
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<span style="font-family: Verdana, sans-serif;">For those of you who are new to this blog or don't recall the details, Pompe disease is a rare, inherited neuromuscular disorder that causes progressive muscle weakness. It is caused by a defective gene and results in a deficiency of an enzyme which leads to excessive buildup of glycogen in the muscle tissue. For us, it was a foreign word that meant nothing, but soon proved to define much of how we lived our life and what occupied much of this author’s mind.</span><br />
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<span style="font-family: Verdana, sans-serif;">One of the interesting impacts of Pompe is on exercise. It was recommended that our girls stay away from exercises which might negatively impact muscle breakdown and steer towards those which would not. The thought is that the breakdown and rebuilding of muscle which is inherent in things like weightlifting was not good as the rebuilding would not occur as in a normal person. So, we were steered towards limited, low impact exercises like swimming. To the girls who always seemed “to run that way” it wasn’t too much of an issue, but to me it was. You see, I love to run. I love the freedom of running through our town, the energy of a race, and the thrill of crossing the finish line. It may sound silly to some, but I hoped I could share that love with my girls, but due to Pompe it was not meant to be … or was it?</span><br />
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<span style="font-family: Verdana, sans-serif;">A number of months ago Donna was cruising through status updates on Facebook when she came across this thing called The Color RunTM. When she clicked on the website it said the following:</span><br />
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<span style="font-family: Verdana, sans-serif;">“The Color Run™ is a unique experience focused less on speed and more on crazy color fun with friends and family. Color runners come from all different ages, shapes, sizes, and speeds; but everyone toeing the start line has a blast. Whether you are a casual morning mall walker or an Olympic athlete, the 3 miles of The Color Run™ course will be the most memorable and colorful run of your life!”</span><br />
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<span style="font-family: Verdana, sans-serif;">She then watched the videos on the site which showed runners, but not the way she expected. It showed people of all stripes – fast and slow - covered in bright colors, laughing, dancing, and celebrating. They were full of energy, celebrating their freedom, together. Perhaps, she thought, this was the run for us.</span><br />
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<span style="font-family: Verdana, sans-serif;">By chance this was the inaugural year for The Color Run in Philadelphia so Donna signed up our whole family and marked it down on the calendar. We were not sure how our girls would last walking three miles, but it did not matter. It did not matter because the thrill of this run was not with the time at the finish, but in how long you could enjoy the process. It was perfect. </span><br />
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<span style="font-family: Verdana, sans-serif;">As the days drew closer I discovered that Carter and I would not be able to join the race due to another event so we passed our tickets onto the girls’ friends. While I wished we could have enjoyed the event together, I was glad it would be infused with the additional energy of their friends. </span><br />
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<span style="font-family: Verdana, sans-serif;">On race day, I stood on the sidelines of Carter’s game in Princeton and received text after text with photos from the race. Each one showed the girls covered with greens, blues, pinks, and purples and most importantly … smiles. When I arrived home later that evening I was greeted with stories on how much fun it was during the run and what a great party they had after thousands of people crossed the finish line. I was told there were runners and walkers, old and young, and all had a grand time. Finally, much to my delight, I was told we needed to do it again next year and that I needed to attend so I could cross the finish line with them. </span><br />
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<span style="font-family: Verdana, sans-serif;">I’ve checked the site and was pleased to see the race is headed back to Philly in 2013. We’ll be signing up as a family again and I hope more of our friends will be able to share in the fun. Either way, I’ll be thrilled because one my hopes will come true. I will finally be able to cross that finish line hand in hand with my girls. </span><br />
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<span style="font-family: Verdana, sans-serif;">Over the years I’ve learned that life can place you on detours you weren’t expecting. However, if you keep looking forward you may find the road you're on is much better than the one you expected. In our case, colorless CHOP turned out to be a haven of comfort and the answer to "Does she always run that way?” was no longer greeted with confusion. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Although I knew it all along, it just took a little race to remind me that doesn't matter whether they run, walk, win, or finish. It doesn't matter because wherever they go their inner color can be seen from far and wide. All you have to do is stand back, look in their eyes, and you realize...</span><br />
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<span style="font-family: Verdana, sans-serif;"><i>She’s A Rainbow!!</i></span><br />
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<span style="font-family: Verdana, sans-serif;">Best,</span><br />
<span style="font-family: Verdana, sans-serif;">Matt</span><br />
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<span style="font-family: Verdana, sans-serif;">Credit to: The Rolling Stones, “She’s A Rainbow”</span><br />
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<span style="font-family: Verdana, sans-serif;">If you are interested in this run in your town, check out their web page at <a href="http://thecolorrun.com/">http://thecolorrun.com/</a>.</span><br />
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<span style="font-family: Verdana, sans-serif;">Here are a few pictures of the adventure.</span><br />
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<span style="font-family: Verdana, sans-serif;">Donna and the girls at the starting line.</span></div>
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Maddie and her friends before the color (minus the cool matching socks).</div>
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Emma and her friend post race.</div>
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<span style="font-family: Verdana, sans-serif;">After the race ... smiles, laughter, and celebration. All before 9 AM!</span></div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1403927290529132193.post-4862437997033025002012-09-09T13:12:00.000-04:002012-09-09T13:12:48.356-04:00London Calling<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>London calling to the faraway towns <br />London calling to the underworld <br /><br /> London calling, yes, I was there, too <br />An' you know what they said? Well, some of it was true! <br />London calling at the top of the dial <br />After all this, won't you give me a smile? </i></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>London calling</i></span>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When I was a senior in high school I had this
outlandish idea. I wanted to celebrate the upcoming step into adulthood
(aka graduating) by gathering a few buddies and driving across the
US. I’d read a few books in English class about young men and adventure
and I felt it was our time.<span style="mso-spacerun: yes;"> </span>I
could picture my friends and me cruising along Route 66 at daybreak,
visiting distant cities, staying at strange motels, meeting interesting people,
and eventually overlooking the Atlantic Ocean.<span style="mso-spacerun: yes;"> </span>For a kid that never left California, it seemed magical.<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Like many things at that age, excitement can
somehow get in the way of reality. Despite immediate promises and
energetic planning, realization of college requirements, parental concern with
teenage boys on their own, and a little something called gas money got in the way.
Graduation came and went and life moved forward. I told myself that
the opportunity to throw caution to the wind and go somewhere outlandish was
not lost, just postponed.<span style="mso-spacerun: yes;"> </span>And
then, many years later, the opportunity returned.<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It was the summer of 2008 and we were sitting on
the sofa enjoying the Beijing Olympics' Closing Ceremonies when the
phone rang. A bit irritated by the interruption during this family time,
I abruptly picked up the phone.<span style="mso-spacerun: yes;"> </span>I
assumed it was someone asking for us a political donation or that guy that kept
trying to sell me lawn service. Fortunately for us it was neither, but a
good friend. Before I could so much as say hello, the question came.
"Do you want to go to London for the 2012 Olympics?"<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">At first I had nothing to say.<span style="mso-spacerun: yes;"> </span>After all, I thought driving across the
US was outlandish, but this seemed crazy.<span style="mso-spacerun: yes;">
</span>Don’t get me wrong, by this time I was a seasoned European traveler for
work, but the challenge in such a trip seemed too large. First off, my family had never been on such a trip. They didn’t even have passports.<span style="mso-spacerun: yes;"> </span>On top of that, I wondered how in the world we could coordinate a trip
for two families to the Olympics and how much would it cost.<span style="mso-spacerun: yes;"> </span>All the caution I didn't have as a teenager was thrown to the wind when I asked the
family and received a resounding, “YES!” <o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A few weeks later, we held our first “war room”
meeting so the adults could outline our plans.<span style="mso-spacerun: yes;"> </span>As we sat down, I saw the same wide eyed excitement that was
in the eyes of my former high school friends.<span style="mso-spacerun: yes;"> </span>This trip was a wonderful opportunity to not only see the
Olympic Games.<span style="mso-spacerun: yes;"> </span>It was an
opportunity to see incredible sites, meet interesting people, spend time with great friends, and watch life long
memories develop in the eyes of our children. There was no turning back and I was thrilled.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Weeks became months and months became years and war
room after war room, we prepared.<span style="mso-spacerun: yes;"> </span>Planning
a trip like this for ten people seemed a bit daunting at times.<span style="mso-spacerun: yes;"> </span>However, we quickly realized that the
planning was not a chore, but exciting in its own right.<span style="mso-spacerun: yes;"> </span>It was fun to talk about what we may do
and what we may see. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It was fun to
use Google Maps to explain the world a bit to our kids.<span style="mso-spacerun: yes;"> </span>And, it was fun to imagine how this one
trip may impact their lives forever.<span style="mso-spacerun: yes;"> </span></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Along the way we did our best to integrate the
girls’ needs vs. potential challenges in London.<span style="mso-spacerun: yes;"> </span>First off, we worked with our IV nurse and the insurance to
allow the girls to receive their treatment just before we left and as soon as
we got home.<span style="mso-spacerun: yes;"> </span>Because of the way
our trip fell, they would be going longer between treatments.<span style="mso-spacerun: yes;"> </span>Second, we anticipated a lot of walking
during the two weeks, so were sure to find an apartment close to a tube station
so they could spend more time on the train and less time on their feet.<span style="mso-spacerun: yes;"> </span>Finally, we were sure to allow them as
much rest as possible as we assumed they would get more tired with time.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So, how was it?</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The trip was fantastic.<span style="mso-spacerun: yes;"> </span>That’s a lie.<span style="mso-spacerun: yes;">
</span>It was beyond fantastic. <span style="mso-spacerun: yes;"> </span>It
was amazingly fantastic! <o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It was amazing to stand in front of Big Ben, ride
the London Eye, cruise the River Themes, tour Buckingham Palace, walk across
Abbey Road, visit Stonehenge, and also watch some of the best athletes in the
world compete at the top of their game.<span style="mso-spacerun: yes;"> It was simply everything we had planned for, everything we had hoped for, and so much more.</span></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Because of some good connections, some hard work, and a bit of magic, we were able to attend a lot of events.<span style="mso-spacerun: yes;"> </span>As a group, these ranged from soccer, to tennis, to indoor volleyball, to beach
volleyball, to basketball, to gymnastics, to swimming, and a few others.<span style="mso-spacerun: yes;"> </span>On top of all that, we were able to
experience so many moments which may never show up in a tourist guide book, but
will be saved in our hearts forever. <o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When we arrived home, we learned that the recovery
time for our girls would take a while.<span style="mso-spacerun: yes;">
</span>Despite receiving their Myozyme treatment the day after flying in, it
took at least a couple weeks for them to get back to normal.<span style="mso-spacerun: yes;"> </span>We all fought through the exhaustion that comes with jet
lag, but theirs was a bit more challenging.<span style="mso-spacerun: yes;"> </span>All those days on their feet, climbing up and down tube
station stairs, and not being on their regular diet, had an impact.<span style="mso-spacerun: yes;"> </span>However, you would not have recognized
it in their face or their attitude.<span style="mso-spacerun: yes;">
</span>They embraced the opportunity to be in London and were not going to
let Pompe slow them down.<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So in the end, life is funny.<span style="mso-spacerun: yes;"> </span>Years and years before, a young man read
about adventure and wondered what lies beyond the California shores.<span style="mso-spacerun: yes;"> </span>While a trip on the road with his high
school buddies seemed like the best way to quench that desire, he was wrong.<span style="mso-spacerun: yes;"> </span>Years and years later he was to find
out that a trip across the ocean with his family and wonderful friends was the
best way to do something outlandish.<span style="mso-spacerun: yes;">
</span>Now that the planning is over, the Olympic flame has been extinguished, and
normal life has returned, that same man is so very happy he picked up the phone when it was… <o:p></o:p></span></div>
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<i style="mso-bidi-font-style: normal;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">London
calling!<o:p></o:p></span></i></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Cheers,<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Matt<o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: The Clash, “London Calling”</span><span class="Apple-style-span" style="font-family: Verdana;"><o:p></o:p></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Day one with the 2012 Olympics Mascot</span></div>
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First event at Wimbledon...Tickets anyone?</div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">USA vs. Brazil in Volleyball</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Two dads at the end of a successful trip...Happy as Larry!</span></div>
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<!--EndFragment-->Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1403927290529132193.post-71940740336214132652012-06-18T21:52:00.000-04:002012-06-18T22:03:39.862-04:00Defying Gravity<span style="font-family: Verdana, sans-serif;"><em>Something has changed within me</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Something is not the same</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>I'm through with playing by the rules</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Of someone else's game</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Too late for second-guessing</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Too late to go back to sleep</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>It's time to trust my instincts</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Close my eyes: and leap! </em></span><br />
<br />
<span style="font-family: Verdana, sans-serif;"><em>It's time to try</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Defying gravity</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>I think I'll try</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Defying gravity</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>And you can't pull me down! </em></span><br />
<br />
<span style="font-family: Verdana, sans-serif;"><em>I'm through accepting limits</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>cause someone says they're so</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Some things I cannot change</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>But till I try, I'll never know! </em></span><br />
<br />
<span style="font-family: Verdana, sans-serif;">I never committed to having the steadiest hand in the crowd, but was sure I had this one. I thought about getting a tripod, but this was just another school concert. I’d been to many before and would attend many in the future. I expected her to sing just another song, but as soon as the first words came out it was clear I was wrong. What I heard was more than a solo. It was a statement. A statement of courage from a little girl who decided to look life in the eye and say, I will not be held down; I will Defy Gravity.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">If you have followed this blog for any period of time you’d know that I am not an impartial judge when it comes to my kids’ performances. While I might be able to be tough on adults trying to break through on American Idol, America’s Got Talent, or X Factor, I’d give my own a 10 at the first note. One touch of emotion, one look in my eye, and I’m done. Yes, I admit it. All that aside, I was stunned that Thursday night, when Maddie took the stage. She’s taken a few singing lessons, belted out a few tunes in plays, but I did not expect this message, or then again, maybe I did. </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">When I was 11, I spent my time with pickup baseball games, paper football on the lunch tables, and generally doing my best to make it through Catholic School. My biggest challenge was math tables and making sure I kept my jokes quiet during weekly mass. I faced no serious burdens only the wrong side of Sister Sarah’s wrath. This was no ruler or harsh word. It was much worse; the infamous, single space, handwritten, five page essay due the following day. (Mine was on John Wayne.) At the time I thought I was living on the edge (inside my carefully crafted suburban bubble), but boy was I wrong. </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">In contrast, when Maddie was 11, she was told by medical experts that her life would be filled with limitations. Her long term ability to walk was in question. She was to start a lifelong treatment with unclear results. She overheard others say they accepted their diagnosis and were not willing change their lives because of it. She felt alone and confused. Never once did I ever face such a challenge and am not sure what I would have done other than crawl up in a corner. That is not Maddie's style. </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">She decided to fight. She learned what she could understand, trusted her parents and caregivers, walked into Day Medicine with a smile on her face and bravery in her heart, and never, ever complained. Since that day things have gotten a bit clearer, the picture a bit rosier, and the future a bit brighter. I guess you could say it happened on its own and that she just had to wait for it. Or, you could say that in making the choice to be brave she changed her outlook.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">That night when I started to video tape, I lost my steady hand. I didn’t shake because of what I saw, but because of what I heard. As I passed the camera to my son I realized I did not want to watch this through a lens. I wanted to take this in for myself. For that night a young girl was defining the way she planned to live and I didn’t want to miss it.</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">This past week the girls attended MDA Camp. I was pleased to hear Maddie sang again, this time at their talent show. I heard from a couple counselors that the room was silenced as she belted out her tune. This time it was a different crowd and a different song, but I hope the impact was the same. I hope at least one person was touched as I was. I hope at least one child who attended the camp, heard her voice, and quietly told themselves that despite their burden they too were going to make a statement. They too would put themselves in front of a crowd one day and tell the world that it is their turn to begin…<em>Defying Gravity</em>!</span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Bravo my dear. Bravo!</span><br />
<span style="font-family: Verdana, sans-serif;">Matt </span><br />
<br />
<span style="font-family: Verdana, sans-serif;">Here is a YouTube link to Maddie’s performance. Thankfully one of our friends had a tripod and took a great video. For some reason the video is a bit faster than the audio, but I promise you it is much better than the shaky one I took! I hope you enjoy it as much as we did.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span><br />
<span style="font-family: Verdana, sans-serif;">Click here:</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><a href="http://www.youtube.com/watch?v=4wKZsT7xp1s">http://www.youtube.com/watch?v=4wKZsT7xp1s</a></span><br />
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<span style="font-family: Verdana, sans-serif;">Credit to: Wicked, “Defying Gravity” </span>Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-1403927290529132193.post-54419563124791670012012-06-03T10:56:00.001-04:002012-06-03T10:56:59.577-04:00Across the Universe<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Images of broken light, which </i></span><div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Dance before me like a million eyes,<br />They call me on and on across the universe.<br />Thoughts meander like a <br />Restless wind inside a letter box<br />They tumble blindly as they make their way across the universe.<br /><br />Nothing's gonna change my world<br />Nothing's gonna change my world<br />Nothing's gonna change my world<br />Nothing's gonna change my world</i><br /><br />Many years ago he told me it took him his whole life to find out what he really wanted to be. At first it sounded a bit sad, but when you saw the joy in his eyes and heard the excitement in his voice, any hint of sadness was washed away and replaced with a broad smile. Years after playing the corporate game with the politics and repetition, he had found peace in a new profession. Who could have guessed it would be at age 70 and as a volunteer fireman?<br /><br />As you may have read in blog posts before, we have become active supporters of the MDA: speaking at events, gathering with friends to raise money, and meeting some wonderful people from all walks of life. Recently Maddie and I were asked to join their Fill the Boot fundraiser kick-off meeting in Harrisburg, PA. The Fill the Boot campaign began back in 1953 when a Boston fire fighter inspired his colleagues to raise money for a friend who had two boys with muscular dystrophy and has expanded since. (That friend's name was Charlie Crowley, which is odd, but no known relation<em>.)</em> Over the years, fire fighters have stood on street corners, boots in hand, raising money for kids with muscular dystrophy. Since 1953 the International Association of Fire Fighters have raised $435,000,000!<br /><br />When Maddie and I were asked to come at speak at the event, she was excited and I was nervous. Maddie had recently been named the Pennsylvania State Goodwill Ambassador and was eager to get to work. I had spoke about our story in front of corporate groups, families, and others, but never in front of this group. My default was to present the same slides I had done so many times before, but something was driving me to tell a different story so I could not only motivate this group to hit the streets with vigor, but also offer them a connection to what they do. At first I did not understand, so set is aside.<br /><br />I sat for some time staring at a blank computer screen trying to come up with the right words, but they did not come. And then, out of the blue, it hit me. My normal story just would not do. I had an important story to share and this just might be the only chance I'd have to share it. So, I opened up my photo files and searched. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />On the drive to Harrisburg Maddie and I talked about life, school, friends, and any old thing she wanted. We played the alphabet game, watched one town pass after another, and enjoyed the quiet. For those of you who have teenage children, you can appreciate how busy life can be going from one event to another. The opportunity to share moments of solitude with your children is a treasure.<br /><br />When we arrived at the hotel and started to meet the fire fighters from across Pennsylvania I became nervous. I had practiced my speech and had to make sure it was right. I felt an obligation to ensure my message was passed on clearly and that it left the group with the same level of inspiration that it gave me. When it was our turn, Maddie and I stood up and off we went.<br /><br />I started the presentation with a short introduction and explanation about Pompe. I then told them that I would not share the usual story of our experiences since diagnosis. Today was special. Today I would share the story of another fire fighter who once said, "there is something special about that one" when he referred to our Maddie. I offered them four dates: 1928, 1993, 1998, and 2004. The first was the date of his birth, the second was the date of his retirement, the third was the date he discovered what he wanted to be, and the last was his passing. <br /><br />I told the story of a man who got involved in his little retirement area, in California's high desert. Through doing so, he noticed something was missing and just like he had done so many times before, he went about to fix it. He raised awareness, raised money, and helped the community invest in a new fire vehicle. He went further by inspiring others to become volunteer fire fighters and then decided it was the thing for him as well. After standing on the sidelines, he became a volunteer, fought mountain fires, house fires, saved crash victims, and became a member of the fire fighter brotherhood. Years later, those brothers stood by him when he fell ill and later by his family as their trucks lead us all to his resting place.<br /><br />My story did not end there. It continued with a story of inspiration. By sharing photos, I explained that his dedication to fire fighters lives on. I told them how his inspiration guided his grandson's decision to become a San Diego fire fighter. I also told of his grand daughter's commitment to help inspire others including here today. While she may lack the strength to match the physical challenges of fire fighting, she was dedicated to help where she could. I stood at the podium with pride as the photos were revealed one after another. This was the story I wanted to tell because this man was more than a firefighter. He was my father, John Crowley, and one of their brothers. While he wouldn't be there to stand on the street corners with them, he would be with them in spirit. <br /><br />Maddie and I finished our presentation together. I mentioned a few lessons we have learned along the way. Maddie said a few words about herself and then what the MDA means to her, her sister, and to her friends. She spoke about fund raising for treatments those she knew that had none. She spoke about her anticipation for MDA Camp and that she loves when the firefighters come there to make dinner. Best BBQ ever! She then thanked them for what they do and for offering hope to everyone with muscular dystrophy. <br /><br />Here are some of the photos I shared at the end of my presentation:<br /> </span></div>
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<span style="font-family: Verdana, sans-serif;">Fighting a house fire.</span></div>
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<span style="font-family: Verdana;">In uniform.</span></div>
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<span style="font-family: Verdana;">His son and grandson, the San Diego fireman.</span></div>
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<span style="font-family: Verdana;">His grandson (middle) at work.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> His grand daughter with all the gear.<br /><br />A few weeks past and I moved on to the other issues of life. There were school events to attend, work to be done, and blogs to be written. We then met up with some of the MDA staff that attended the event. As we relaxed, one approached me and told me she had a photo from my speech, which she wanted to share because there was something special about it. She had taken it at the Fill the Boot event when I was talking of inspiration and sharing photos. When she showed it to me I just smiled.<br /><br />As you can see below, it's a photo of me at the podium and my dad on the screen. <br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrhF3DLNpG2zKzoJohQgU3sry3L2RpxZyLM4dIoJ832FdyevZb-bscygfIxVx_Xw1AEwNNdbx3MWie0-AR0F2tKo-5BFjwOfvonJpa-90XfcqjmbvYbxJ0WyKKcZiPOiDJXIB-SFGBJiA/s1600/IMG_2844_2.JPG"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrhF3DLNpG2zKzoJohQgU3sry3L2RpxZyLM4dIoJ832FdyevZb-bscygfIxVx_Xw1AEwNNdbx3MWie0-AR0F2tKo-5BFjwOfvonJpa-90XfcqjmbvYbxJ0WyKKcZiPOiDJXIB-SFGBJiA/s400/IMG_2844_2.JPG" /></a><br /><br />Maybe it was the lighting in the room; the angle of the picture, or just maybe it was a little divine touch. Either way, that photo showed a son proudly speaking of his father and a dad whose face seems to have taken on extra color and come to life. I'm not saying it was hocus pocus or mystical magic. All I know is that it was a moment, captured in time, when a man appeared to reconfirm he was right all those years ago when he looked at Maddie and said, "there is something special about that one". From <em>Across the Universe</em> he saw that his little grand daughter was working hard to inspire at least one more fire fighter to volunteer to help others, just like he had done so many years before. <br /><br />So, the ending of the song says, "Nothing's gonna change my world," but I don't believe it. I don't because I've witnessed a team of dedicated firefighters, a grand daughter, and a father do just that.<br /><br />Thanks for reading,<br />Matt<br /><br />Credit to: The Beatles, "Across the Universe"</span></div>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-1403927290529132193.post-37011024473732528752012-05-27T11:33:00.001-04:002012-05-27T11:33:51.864-04:00Do You Believe in Magic?<span style="font-family: Verdana, sans-serif;"><em>Do you believe in magic in a young girl's heart</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>How the music can free her, whenever it starts</em></span><br />
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<span style="font-family: Verdana, sans-serif;"><em>And it's magic, if the music is groovy</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>It makes you feel happy like an old-time movie</em></span><br />
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<span style="font-family: Verdana, sans-serif;"><em>I'll tell you about the magic, and it'll free your soul</em></span><br />
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<span style="font-family: Verdana, sans-serif;">I was in 5th grade when I first saw magic happen in Philadelphia and I never thought it would be repeated. Boy was I wrong!</span><br />
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<span style="font-family: Verdana, sans-serif;">As a young boy, living in Southern California, my knowledge about Philadelphia was limited to two things. The first is what we had learned in Social Studies class and the second was what was happening on the basketball court. Like everyone else, we learned all about the Liberty Bell and the Declaration of Independence. While interesting, something that happened 200 years ago seemed like ancient history considering that every LA building he saw was no more than 30 years old. However, the second thing about Philly was very real to a kid who loved basketball: his name was Dr. J.</span><br />
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<span style="font-family: Verdana, sans-serif;">During basketball season, the five Crowley boys had one team: the Los Angeles Lakers. I recall nights watching them on TV and hours in our driveway trying to reproduce Kareem Abdul-Jabbar’s famous sky hook. The Lakers were our team and there was no room for another. However, when no one was around I would also quietly pretend I was a certain 76er. Dr. J. was one of the most amazing athletes I had ever seen. He seemed to soar above the rim and make the unbelievable happen. Over and over, I would attempt his famous behind the backboard layup, but I was a little too small and honestly a little too uncoordinated. I quietly thought he was the best, but I was soon to see better. </span><br />
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<span style="font-family: Verdana, sans-serif;">It was the 1979-1980 NBA season and the Los Angeles Lakers were playing the Philadelphia 76ers in the Finals. I loved watching Dr. J, but there was no doubt my allegiance lied with the Lakers. It was a hard fought series and at the end of Game five I was worried. Kareem injured his ankle and could not play. With Game Six back in Philadelphia, I thought the Lakers were in trouble. That was until a rookie player decided to step up and play center. In front of the 76ers home crowd, he scored 42 points and recorded seven assists covering the court like no one I had seen before. From that day forward he was my new favorite player. His was named Earvin Johnson otherwise known as “Magic”. </span><br />
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<span style="font-family: Verdana, sans-serif;">Over the next several years the Lakers continued to get better and won a series of NBA Championships. Dr. J retired from basketball and the 76ers took a step back while other teams like the Celtics returned to glory. The year we were married Magic retired from basketball and took a step away from the limelight. These days Magic is an owner of the Los Angeles Dodgers and a TV commentator during basketball season. He looks good, but is defiantly not in shape to run up and down a basketball court, but then again neither am I. It seemed that the magic I once saw in Philadelphia was never to be repeated. That was until last Friday.</span><br />
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<span style="font-family: Verdana, sans-serif;">As we drove in CHOP at 8 AM it was hard to believe it was almost a year since we’d last done it. The girls’ last checkup had gone so well that the doctors told us we could wait a year to be seen. Over that year life seemed to settle in and our constant talk of CHOP faded. We transitioned to administration of Lumizyme at home, the girls kept up their swimming and exercise regimen, mom kept close eye on their diets, and I typed up blogs. Pompe was always on our mind, but just became part of our daily life. Every so often something would pop up of concern, but they were fewer and farther between. Regardless, that morning we were nervous parents.</span><br />
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<span style="font-family: Verdana, sans-serif;">There was nothing specific to be concerned about, but since we could not see what was going on inside our girls’ muscle cells, we never really knew if what we were doing was making a difference. We continued to follow other Pompe families on Facebook and watched as some improved while others struggled. The disease is a bit tricky to predict and we were just hoping we landed on the good side of luck. We were not prepared for what was coming next.</span><br />
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<span style="font-family: Verdana, sans-serif;">Each appointment starts with the usual height, weight, and blood pressure followed by an introduction to some old faces and some new ones. Then it was time to settle in a little room and get down to business. The first up was physical therapy. Maddie went first, followed by Emma. The PT specialist used her tool to test the strength in one muscle after another. She tested neck flexors, elbow extensions, wrist extensions, hip flexors, hip abductors, knee flexors and more. She had the girls pinch their fingers together, hold a fist, do a 10 meter run, stand up from laying on the floor (Gower’s test), and run up four steps. Every muscle they had was tested, retested, and timed. She said everything was looking good and then printed the results. </span><br />
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<span style="font-family: Verdana, sans-serif;">In many of the cases the results were what we hoped for, things were stable, but in others we were amazed. Their hip muscles were stronger! Their lower leg muscles were stronger! Their 10 meter run time was faster, their Gower’s time was faster, and their four step time was faster! Something was clearly going in their favor, but before we got too excited we wanted to get the doctor’s input. </span><br />
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<span style="font-family: Verdana, sans-serif;">This time we met with two doctors. The first was the one who replaced Dr. Finkel, who moved to run a new hospital division in Florida, and the second was Dr. Bonnemann. He was the one who diagnosed the girls, but had since taken up a position at the National Institutes of Health. After each talked to the girls, completed a few tests, and reviewed the results from the Physical Therapist, they were pleased. The girls still had distinct areas of weakness such as their upper body, but the results were clear. They were stronger!</span><br />
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<span style="font-family: Verdana, sans-serif;">On top of that, the doctor commented that they did not believe there was much glycogen stored in their muscles. All those nights in the pool, all those days watching their diets, and all those afternoons receiving their Lumizyme infusions were paying off. But in addition, their early diagnosis had made a big difference. Catching this before much of the muscle damage had been done has allowed their efforts to be that much more successful. </span><br />
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<span style="font-family: Verdana, sans-serif;">I’m not sure if our feet touched the ground as we left the building. This was such great news and to be honest, unexpected. We had hoped to hear that things were stable and really hoping to hear that things had not gotten worse right under our eyes. Somehow we heard something we had only wished could happen something that could only be magic.</span><br />
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<span style="font-family: Verdana, sans-serif;">So as I sit here and type away on my laptop I am quite pleased to admit that I was wrong so many years ago. When I was 11, I thought I had seen a once in a lifetime event. I thought magic could never return to Philadelphia, but last Friday I found out that, at least for one family, it did.</span><br />
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<span style="font-family: Verdana, sans-serif;">We’ll be heading back to CHOP in six months to have the same set of tests and will see the same doctor. That time I’ll be a bit more confident on the ride in. That time I will have a smile on my face as we enter the building and that time I’ll be humming…</span><br />
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<span style="font-family: Verdana, sans-serif;">Do you believe in magic?</span><br />
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<span style="font-family: Verdana, sans-serif;">All for Two and Two for All,</span><br />
<span style="font-family: Verdana, sans-serif;">Matt</span><br />
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<span style="font-family: Verdana, sans-serif;">Credit to The Lovin’ Spoonful, “Do You Believe in Magic”</span><span style="font-family: Verdana, sans-serif;"></span>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1403927290529132193.post-57094603412639059082012-04-28T15:30:00.001-04:002012-04-28T15:30:02.115-04:00Golden Slumbers<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Once there was a way to get back homeward</i></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Once there was a way to get back home</i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Sleep pretty darling do not cry </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>And I will sing a lullaby </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Golden slumbers fill your eyes </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Smiles awake you when you rise </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Sleep pretty darling do not cry </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>And I will sing a lullaby </i></span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It must have been that discussion with the UPS driver that made me think about it. After all it was just another Saturday morning. I was up earlier than the rest of the clan so I could enjoy the quiet house and for some reason decided to start early yard work. Don't get me wrong, I was more than happy to get outside because it was spring. There is something about the combination of cool spring air, morning sun creeping through the trees, and fresh cut grass that has always helped cleared my head. The worries of the week are left behind as the weekend world comes alive. It was just like so many suburban Saturday mornings with one exception, the UPS delivery.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Every other Thursday we receive a call from the pharmacy to confirm that our shipment will be on the way and every other Saturday the same UPS driver delivers two boxes better than any Christmas present I could receive. For almost a year, he's driven up our street, stopped his truck, carried the two white boxes up our driveway, and requested a signature. There has never been a question, just the joyful hello you would expect from any UPS driver. </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Maybe it was because I was alone outside the house so the kids couldn't hear or maybe he just figured it's been months I've been meaning to ask so today's the day. Either way, when he walked up to me put down boxes and handed me the document to sign he asked. "If you don't mind me asking, what do you guys get every other Saturday morning? Each week, my truck is empty and you are my only delivery." So I explained. I explained our girls have a rare, genetic muscle disease called Pompe and that these boxes hold their medicine. </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">He looked at me with a sad face and said, "So is this going to make them better, like will this make them recover?" I told him it would make them better, that this was a lifelong treatment they would be on for all their lives, and that it was OK. He awkwardly apologized, not knowing what to say. I then explained to him how much </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">we looked forward to hearing the roar of his truck on Saturday mornings. To us it means independence and a better quality of life for our girls. This seemed to lift his spirits because he smiled, shook my hand, and jogged off to his truck.</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In May 2012 we will mark one year since that wonderful day when the girls first met their nurse, first watched their medicine mixed at our kitchen table, first had the IV set where they ate their dinner, and first sunk into their own sofa as the medicine seeped through their veins. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When we received the green light to have the infusions at home, we were nervous, excited, tense, thrilled, busy, and ... did I mention nervous? Now, it is a day we look forward to. By the end of two weeks the girls are a bit more tired, a bit slower, a bit achy, and ready to get their meds. To make it even better, we love our home IV nurse Adam.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As you can imagine, the thought of having someone come into your house every two weeks and sit for hours with your children was a bit unsettling. Would they be reliable, would they be respectable, would they be able to manage any crisis, and most important to me - would they have a sense of humor? Now I recognize having a sense of humor is quite low on the totem pole behind capability here, but to survive in our house, it's a must. Fortunately for us, Adam is awesome. His medical skill and knowledge are top notch, he relates well to the girls, and has a great sense of humor. </span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Having Adam at the house is like having a good friend pop by every other week. When he arrives it is all business. He gets that medicine mixed, gets those IV's going, connects the IV pumps, and ensures the girls meds are flowing well. Then, things calm down a bit. At all times he is like a bear watching his cubs to make sure they are doing well, quietly checking IV lines, taking blood pressure, and the like. In between we all talk. We talk about food, we talk about medicine, we talk about politics, we talk about the kids' events, we talk about how cool it must be to be Carter, and then we talk about food again. Adam is quiet the food connoisseur and Donna and him love to talk about this recipe, that recipe, etc., etc. By this time I usually step back into my office, close the door, and catch up on work.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">One of the benefits of what I do is that I am able to work from home often. This comes in handy on treatment days in case the girls need to be picked from school or I have to let Adam in to get set-up before they arrive home. One downside can be getting things done in a loud house. At first this concerned me with the treatments at home, but over time I've noticed that after the rush of the set-up, our house turns into a gentle, quiet place. Quite often the girls move to the sofas to do homework or read as they get their meds. The portable IV pump enables them to move around the house with ease, but Adam likes them to be together so he can monitor them easier, keeping an eye out before anything becomes an emergency. I'll turn on some background music or a fan and work away without problem.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The other day I came out of the office and the house was silent. Adam was reading the paper, Donna was at the grocery store, Maddie was reading, and Emma was nowhere to be seen. I asked Adam how things were going and he said, "Great!" I then asked where Emma could be and was directed to the front room. There I found her, under a blanket, fast asleep with her IV pump at her side. In the old days, we would drive home from CHOP with two kinds of kids. The first kind had the giggles as their body was filled with a strange release of sugar, which made them laugh uncontrollably. The second kind were exhausted, fast asleep from a long day as their medicine quietly did its magic. For Emma, today was the latter. She lay fast asleep with g</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>olden slumbers</i> filling her eyes.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It's been a long time since I have been a junior in high school and don't recall if I worked as hard as she does. Every class she takes seems to be honors this or advanced that and every week there are discussions about SATs and colleges. Some of the time they come from her to us, but most of the time they come from others. The usual questions range from, </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"Where do you want to go to college?" to </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">"What do you want to be?" to "What do you want to do?" and "Are your grades, SATs, ACTs, etc., good enough?". I appreciate all of this, but also recognize it's a lot of stress on a 17 year old who also has to deal with being a bit more tired than some others and worries at times what the future with Pompe may bring. </span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When I saw her peacefully sleeping I couldn't help but sit and smile. For those few moments the best part of having home treatments was realized. Despite all the struggles or worries she may face, she is able to curl up on her own sofa, with her own pillow, and be swept away to slumber with the confidence of knowing that s</span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">miles from her parents, her siblings, and her awesome nurse Adam<i> awake you when she rises.</i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So as I got up and tip toed back to my office, I left a small kiss on her forehead, and thought how fortunate we truly are. We have wonderful kids, a great support team in our area, and a wonderful nurse that every two weeks fills our house with laughter and brings comfort and hope to our family. With that, I smiled and hummed...</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>Sleep pretty darling do not cry </i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>And I will sing a lullaby</i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i><br /></i></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Happy Spring,</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Matt</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to, The Beatles "Golden Slumbers"</span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">*If you have never taken the time to listen to side two of Abbey Road, I recommend you do. </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A sunny, spring morning is the perfect time. Leave the mower in the garage. A hot cup of coffee is a better plan. Enjoy!</span></div>
<div>
</div>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1403927290529132193.post-53186246925659251272012-03-31T12:20:00.000-04:002012-03-31T18:12:15.990-04:00Old Friends<span class="Apple-style-span">
</span><br />
<div class="MsoNormal" style="font-family: Arial;">
<span class="Apple-style-span"><i><span style="font-family: Verdana;">Old friends,</span></i></span><br />
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Old friends,</span></i></div>
<span class="Apple-style-span">
</span><br />
<div class="MsoNormal" style="font-family: Arial;">
<span class="Apple-style-span"><i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Sat on their park bench
like bookends<o:p></o:p></span></i></span></div>
<span class="Apple-style-span">
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">A newspaper blown
through the grass<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Falls on the round toes,
of the high shoes, of the old friends<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Old friends, <o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Winter companions, the
old men<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Lost in their overcoats,
waiting for the sunset<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">The sounds of the city
sifting through trees<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Settle like dust on the
shoulders of the old friends<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Can you imagine us years
from today, sharing a park bench quietly?<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">How terribly strange to
be seventy<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">I spend quite a bit of time in the car. Driving from one appointment to another
can take hours. To pass the time I
like to listen to music, a bit of talk radio, but most of all I like to talk
with my mom in California. For
some reason, having a chat with mom is the perfect way to finish off a long
day. It kind of reminds me of
being a little kid, sitting at the kitchen table, pretending to do homework and
rambling on as mom cleaned up after dinner. In those days the conversation was 99% about me. Come to think of it, I did 99% of the
talking while mom just smiled and listened. I talked about the usual stuff – school and sports, but most
of all, my friends.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">These days our conversations are a bit more diverse. Mom
recently turned 84 and no longer spends much time in the kitchen and my homework
is all done. She does however
spend a bit more time reflecting on life.
I remember my grandma doing the same so I guess it is normal as you
age. Either way, I enjoy the
stories. The other day we started
talking about friends, but this time it wasn’t about my friends at St. Dominic
Savio, it was about hers. We
started off with some neighbors, people she’d met while visiting the old
neighborhood, but then got to the good stuff – the old friends.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">One by one she rattled off names of people from my childhood. First came her friends. There was Mrs. Robertson, the lady with
112 hair clips who filled our house with Shaklee vitamins; Mrs. Dodd, the lady
down the street who seemed to be 98 when I was 9, but lived for another 30
years; Mrs. Alpago, who ran the Church’s Guild like a tight ship, always
leaving time to make homemade donuts, Mrs. Armijo, my beloved Godmother, and several others whose names I did not
recall, but somehow remembered from my early days. Then came my dad’s friends. There was Joe Miller who always wore a smile on his face
especially when he was winning at poker, Ron Delude whom everyone called
Frenchie for a reason I never figured out, Johnny Miller who’s cool demeanor
and slicked back hair made him memorable to me, Uncle Robert who was the
neighborhood James Dean, and many more.
<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">One by one she relived the old days. There were stories of how the friends
met, poker games at the house with homemade pizza, this wedding and that
wedding, church events, and lots and lots of laughter. To me it seems like so long ago, but
she spoke of the times and places like yesterday. The level of detail was great and even though I don’t recall
all the faces, the people came alive in story. I’ve heard many of these stories before and I’m sure I will
hear them again, but I don’t mind. The story of friendship will never grow
old. <o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">I started to think about Old Friends a few weeks ago when
I received an unexpected Facebook invitation. I don’t get on Facebook as much as I used to. Maybe I’m too busy or maybe I spend too
much time in front of the screen in my 9-5. Either way, when I do check in, I’m usually off after a
quick review. So when the friend
invite popped up, I took a glance and closed it for another day. Something funny happened though. Rather than getting lost in the business
of the day, that photo stuck in my head.
I thought about it over and over trying to figure it out the mystery,
but no luck. I somewhat recognized
the name, but could not place the photo.<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">That next Saturday I got up early, grabbed a cup of coffee,
and looked closer at the picture on my screen. As I set the cleanly shaved head and twenty plus years
aside, the photo came into focus and a rush of emotion filled my eyes. Suddenly I was looking at my old friend
from high school whom I had not seen in twenty-five years. All I could say was, “Wow!” as I came
across a series of photos from days gone past. There were photos of vacations, photos of school events, and
photos of friends whose faces came to life after seemingly being washed away in
time. <o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">I don’t remember how I lost touch with my group of
friends. It just seemed to happen
slowly. We went to different
colleges, dated different girls, got married, had kids, and started to
work. At the time I did not think
too much of it as life was moving fast and each new adventure brought new
faces, new names, and new friends.
However, just like my mom, I’ve begun to reflect a bit more. I guess I have my kids to thank for
that. When they were little I
didn’t think about the past too much probably because I didn’t remember being
that young. But, when your kids
hit middle school and high school your memory becomes a bit clearer. If you’re like me, you remember that first
day walking the halls of high school and all the adventures that came your way
over the coming four years. <o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">I reviewed my old friend’s Facebook page and discovered
names of people I had almost forgotten.
After searching a bit more, I sent out a series of friend requests and
happily received responses. With
eagerness I read notes regarding what had happened to those I once held so dear. There were stories of their lives today
and stories of lives missed out on.
Some brought joy while others brought disappointment. Everyone seemed to be doing well. Some like me moved far away from home
and got busy with marriage, kids, and jobs, while others drifted away
purposely, never to be heard from again.
While I read some stories with a touch or regret for missing out on all
those years, in the end I was the lucky one. With a few clicks of the mouse I had reopened my past and
rekindled old friendships, which will carry me into the future. <o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">Earlier this month Maddie’s middle school put on a roaring
rendition of “The Music Man”. Months
of hard work after school and on weekends culminated in a weekend of sold out
shows and many smiles for all. At
the end of the last show tradition calls for a party after everyone cleans up
the sets and puts away the costumes.
Set to the beat of a DJ and fueled by pizza, snacks, and drinks, the
kids dance away celebrating a job well done. Emma had participated in a few plays and play parties in
middle school as well and I can reassure you they all end up the same way. The kids stand together, tears in their
eyes, as they reminisce about the great times they had together. Usually those tears are mixed in with a
bit of laughter about this funny thing or that crazy thing. Either way, the emotions are raw,
honest, and focused on one thing – friendship. As much as they will miss the songs and the dancing, nothing
compares to what they will miss the most, their old friends. <o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">That night I picked up Maddie and quietly drove home. Her eyes were a bit sad, but she was
focused on texting. Just as fast
as a new message arrived, a new one was sent out. The emotion of the day was still in high gear and they
needed to stay in touch. When we
arrived home we spoke a bit about the weekend before she went up to bed
exhausted. As I walked in to check
on her I found her updating Facebook.
Amongst a series of posts about the friends they made during the play
and the sadness they felt now that it ended, she posted something that brought
to life much of what I had been feeling as I relived the past with my mom and
rekindled old friendships online.
Rather than being sad about old friends who have passed on or
disappointed for years missed out, she offered the following: <o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">"Don't cry because it's over. Smile because it happened."<o:p></o:p></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
</span><span class="Apple-style-span"><div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">Bravo my dear! Bravo!</span></div>
</span><span class="Apple-style-span"><div class="MsoNormal" style="font-family: Arial;">
<br /></div>
</span><span class="Apple-style-span" style="font-family: Verdana;">All the best to friends near and far,</span><span class="Apple-style-span"><div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">Matt</span></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;"><br /></span></div>
<div class="MsoNormal" style="font-family: Arial;">
<span style="font-family: Verdana;">------------------------------------</span></div>
</span><span class="Apple-style-span" style="font-family: Verdana;">As a way to capture some unique moments in time I thought you’d enjoy the following:</span><span class="Apple-style-span"><div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Time it was and what a
time it was it was,<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">A time of innocence, a
time of confidences<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial; text-align: center;">
<br /></div>
<div class="MsoNormal" style="font-family: Arial; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Long ago it must be, I
have a photograph<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial; text-align: center;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Verdana;">Preserve your memories;
they're all that's left you…<o:p></o:p></span></i></div>
<div class="MsoNormal" style="font-family: Arial;">
<br /></div>
</span><span class="Apple-style-span" style="font-family: Arial;"><br /></span><span class="Apple-style-span"><div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrD9dCjTCRWTsORR3Mosu1yxWybdK5M-2u8OG9mdNK9Cy0J70pnr9Ivw_43hGxVgyBxbwlJbZo7BVFjf_uIhrgjlqKuxa_W85SzYptIPRoAVKT11r8Zem4AW7TK_9yG4Lejq5_rNTekjg/s1600/1945JCFriends.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrD9dCjTCRWTsORR3Mosu1yxWybdK5M-2u8OG9mdNK9Cy0J70pnr9Ivw_43hGxVgyBxbwlJbZo7BVFjf_uIhrgjlqKuxa_W85SzYptIPRoAVKT11r8Zem4AW7TK_9yG4Lejq5_rNTekjg/s400/1945JCFriends.jpg" width="400" /></a></div>
</span><br />
<br />
<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Arial;">Dad and his high school buddies</span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Arial;"><span class="Apple-style-span" style="font-size: large;"><br /></span></span></div>
<div style="text-align: center;">
<span class="Apple-style-span" style="font-family: Arial;"><br /></span></div>
<span class="Apple-style-span">
</span><br />
<div class="separator" style="clear: both; font-family: Arial; text-align: center;">
<span class="Apple-style-span"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy8nXl98lUcGv6Xp-sKcKAJhnlXRMhFL-6FOsGlV0y3vqFMHJO1g4VSzbLlpmYqmJHtP3b8j-zZURSkqRslChqkk7uGwc4MFams9JKG30kB_3S8g6T09WJHjeDIbf_YFY8iIZdjykZ7A8/s1600/1952Grad2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="377" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy8nXl98lUcGv6Xp-sKcKAJhnlXRMhFL-6FOsGlV0y3vqFMHJO1g4VSzbLlpmYqmJHtP3b8j-zZURSkqRslChqkk7uGwc4MFams9JKG30kB_3S8g6T09WJHjeDIbf_YFY8iIZdjykZ7A8/s400/1952Grad2.jpg" width="400" /></a></span></div>
<span class="Apple-style-span">
</span><br />
<div style="font-family: Arial; text-align: center;">
<span class="Apple-style-span"> Mom and Dad on graduation day</span></div>
<span class="Apple-style-span">
<div style="font-family: Arial;">
<br /></div>
<div class="separator" style="clear: both; font-family: Arial; text-align: center;">
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Poker games with Frenchie, Uncle Robert, Joe, Johnny, Mom, Kath, etc.</div>
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<b style="font-size: x-large;"> </b>Matt and his high school friends circa 1987</div>
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Maddie and her friends from "The Music Man"</div>
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</span><span class="Apple-style-span" style="font-family: Verdana;">Credit to: Simon and Garfunkel, </span><span class="Apple-style-span" style="font-family: Verdana;">“Old Friends” and </span><span class="Apple-style-span" style="font-family: Verdana;">“Bookends” </span><span class="Apple-style-span"><div class="MsoNormal" style="font-family: Arial;">
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<span class="Apple-style-span">
</span>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1403927290529132193.post-56638357545237502012-03-13T20:29:00.000-04:002012-03-13T20:29:14.133-04:00She Blinded Me With Science<!--[if gte mso 9]><xml>
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<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">It's poetry in motion<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">He turned his presentation to
me<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">As deep as any ocean<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">As sweet as any harmony<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">Mmm - but He blinded me with
science<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">"He blinded me with
science!"<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">And failed me in biology</span></i><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">When I'm listening close to
him<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">"Blinding me with
science - science!"<o:p></o:p></span></i></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">I can smell the chemicals</span></i><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">"Blinding me with
science - science!"</span></i><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">He blinded me with science</span></i><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<i><span style="font-family: Verdana;">And failed me in chemistry</span></i><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">A lifetime ago I decided that
I wanted to be a doctor, at least for a while. Now, this was after I ruled out
policeman, fireman, musician, and all the other cool things young boys wanted
to be at the time. I'd seen a few doctors in my time and they seemed like
normal people with a good memory and lots of reference books. With a little
smarts and a lot of confidence, I told myself it could be done.<span style="mso-spacerun: yes;"> </span>It all made sense until...He Blinded Me
With Science.</span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">As high school faded and
college became a reality, my Dad reminded me that sooner or later I had to
choose a major. Before the days of the Internet it was tough to find good
information about majors so I did a little research and threw a few darts on
the wall. Business? No, I'd have to wear a suit everyday. Education? Perhaps,
as long as I did not have teach kids like me. Computer Science? What would I do
with that (ha)? Medicine? Well, of course, that’s the job for me!</span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">So off I went getting ready
for life as a doctor. I read a few articles about medical school, talked to a
few professors, and even began to schedule my classes. The first was an
advanced Biology class, which was challenging, but came easy to me because I
enjoyed it so much. Biology seemed to be all around us so connecting to the
subject matter was easy. Then came Chemistry. I was never a big fan of the
topic, but if I was to become a doctor I had no choice but to climb that
mountain and conquer it.</span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">If you know anything about
mountain climbing, you know walking up to Mount Kilimanjaro one day and
proclaiming, "Bring it!” is not a guarantor of success. Rather, you need
to get the right gear, take a few climbing classes, start out at smaller
mountains, and progressively improve your skills until you are ready. Somehow
this didn't enter my mind when I signed up for Chemistry for Majors.<span style="mso-spacerun: yes;"> </span>You see I did not complete any of the
prerequisites. Not only had I not taken Chem. 101 like I was supposed to, I
never even bothered to take Chem. in high school. Looking back I am not sure
how I got into the class, but I do remember how I felt shortly after it began.</span><span style="font-family: Times;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">On day one, the professor
introduced himself and immediately began to cover the chalkboard with a series
of phrases and calculations I had never seen before. Rather than raise my hand
and ask a question, I decided to look around and see if anyone else looked lost.
Unfortunately everyone else was smiling, writing away, and nodding with
acknowledgement. I felt like that scene in the 80's movie "Better off
Dead" when everyone except John Cusack seemed to laugh at the math
teachers jokes and to race at the chance to answer the first question. I was
clearly outnumbered and in the wrong place.<span style="mso-spacerun: yes;"> </span>The teacher had just <i>Blinded Me With Science!</i></span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">I continued on with the
course, eking out a passing grade and learned a few things about bravado, preparation,
and hard work. When it was done, I reviewed the course load ahead and
determined that this was just the start.<span style="mso-spacerun: yes;">
</span>There would be many more classes including the dreaded Organic Chemistry
ahead of me. It was then that I decided that this medical thing wasn't for me.
So, off I went in another direction and over time forgot about that chemistry
teacher and that class until a recent visit to CHOP.</span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">This visit to CHOP was unlike
those we have had before. It was not for the girls’ check-up or treatment. This
was for a Grand Rounds speech by Dr. Barry Byrne of the University of Florida.
Grand Rounds is a formal meeting where doctors and residents discuss the details
of a clinical case, sharing findings and discussing options. Today, Dr. Byrne had
the honor of speaking about his Pompe disease research. What made this day so
special was that he had asked us if the girls could support him by answering questions
at the end. Donna and I were honored and the girls were thrilled!</span><span style="font-family: Times;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">We met up with Dr. Byrne, Dr.
Finkel, and the head resident before the talk.<span style="mso-spacerun: yes;"> </span>We shared some stories about the girls, our experiences at
CHOP, and the research studies Emma and Maddie are participating in down at U
of F.<span style="mso-spacerun: yes;"> </span>Once we were done with the
small talk, we entered a big conference room filled by close to two hundred doctors
all wearing lab coats embroidered with impressive titles.<span style="mso-spacerun: yes;"> </span>As I sat down and looked around, I
realized this room looked strangely familiar. It was a bit more comfortable and
definitely more high tech, but it looked just like my Chemistry for Majors
class. </span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">I eased into my chair
remembering that this time I had no test to take and no class to pass. I was
here as a guest.<span style="mso-spacerun: yes;"> </span>My girls were the
important ones. My job was just to listen and listen I did, and confused I
became. Dr. Byrne began his speech with a few jokes and then began to lay out
one long technical term after another with ease.<span style="mso-spacerun: yes;"> </span>He showed charts I could not understand and graphs I could
not comprehend.<span style="mso-spacerun: yes;"> </span>I began to
sweat.<span style="mso-spacerun: yes;"> </span>I began to panic.<span style="mso-spacerun: yes;"> </span>Before I knew it, I was back. I looked
up at the others to see if they were as confused as I, but everyone else was smiling,
writing away, and nodding with acknowledgement. Oh no!<span style="mso-spacerun: yes;"> </span>Dr. Byrne just <i>Blinded Me With
Science!</i></span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">At the end of the talk, he
invited the girls up on the stage to tell their story and answer questions. I
stood on the side of the stage for support, as this was their show. I could
tell that at first the experts weren't sure what to do as they looked at these
sisters on stage. Should they ask questions or just respectfully listen and
then clap? Rather than let the quiet set in, Emma kicked it off saying; "I
do a lot of speeches at school so I’m not afraid to answer questions.<span style="mso-spacerun: yes;"> </span>Please go ahead." That opened the
floodgates and off they went. </span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">Question after question
rolled in and Emma and Maddie fielded them with the ease of a Major League
shortstop. They ranged from “what is it like to have a sister with the same
disease” to “how do kids accept you at school” to “did you see the signs”, etc.
I felt a rush of pride. Here were the same little girls who once sat in tears
over their diagnosis, standing in front of a group from one of the best
Children's Hospitals in the world, answering questions like it was a day out
with their friends. Their grace, their poise, and their passion humbled me.</span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">And then just when I was
feeling my best, in rolled a question that went something like this. "Can
you explain why your body experienced elevated liver enzyme levels even though
you did not have a liver condition?" I glanced over at Dr. Byrne and we
both realized that maybe he ought to save them on this one. However, just as he
approached the microphone, Emma looked over, and waived him off. She then looked
out into the crowd and replied with, "Creatine Kinase is released from your
muscles when they are stressed or overworked thereby increasing the CK level in
ones liver.”</span> <span style="font-family: Verdana;">I stood speechless.<span style="mso-spacerun: yes;"> </span></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;"><br /></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">Just when I felt like I belonged with
the scientists, my own daughter set me back. </span><span class="Apple-style-span" style="font-family: Verdana;">When I least expected it…</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span class="Apple-style-span" style="font-family: Verdana;"><i><br /></i></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span class="Apple-style-span" style="font-family: Verdana;"><i>She Blinded
Me With Science</i></span><span class="Apple-style-span" style="font-family: Verdana;">!</span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">Keep studying,</span><span style="font-family: Times;"><o:p></o:p></span></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">Matt</span><span style="font-family: Times;"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-family: Verdana;">Credit to: Thomas Dolby,
"She Blinded Me With Science"</span><span style="font-family: Times; font-size: 10.0pt; mso-bidi-font-family: Times; mso-bidi-font-size: 18.0pt;"><o:p></o:p></span></div>
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<span style="font-family: Verdana;"><br /></span></div>
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<span style="font-family: Verdana;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGIHJ-uTrqmEAmXTj1WRYllja6JApNObrkAQ7tGMMLvBa1nSIjlzfIznuc36efWlwBG58oOJ61MQKguBd8wCDMoS_QF6kBQR_zP-nEDZvyyIV4lZ8zbFHjm0cle1Qwr_ixv9RiHUaW_lQ/s1600/IMG_8333.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGIHJ-uTrqmEAmXTj1WRYllja6JApNObrkAQ7tGMMLvBa1nSIjlzfIznuc36efWlwBG58oOJ61MQKguBd8wCDMoS_QF6kBQR_zP-nEDZvyyIV4lZ8zbFHjm0cle1Qwr_ixv9RiHUaW_lQ/s400/IMG_8333.JPG" width="400" /></a></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-family: Verdana;">Dr. Byrne with the girls</span></div>
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<!--EndFragment-->Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1403927290529132193.post-4853184491029949602012-03-04T16:36:00.000-05:002012-03-05T18:12:08.644-05:00In Your Eyes<span style="font-family: Verdana, sans-serif;"><em>In your eyes</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>The light the heat</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>In your eyes</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>I am complete</em></span><br />
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<span style="font-family: Verdana, sans-serif;"><em>In your eyes</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>I see the doorway to a thousand churches</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>In your eyes</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>The resolution of all the fruitless searches</em></span><br />
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<span style="font-family: Verdana, sans-serif;"><em>In your eyes</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>I see the light and the heat</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>In your eyes</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>Oh, I want to be that complete</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>I want to touch the light</em></span><br />
<span style="font-family: Verdana, sans-serif;"><em>The heat I see in your eyes</em></span><br />
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<span style="font-family: Verdana, sans-serif;">Every so often you have an experience that has an impact on your soul. It could be a day of sadness, a day of joy, or a day of reflection. Whichever it is, hopefully you are wise enough to recognize it and note it down in your book of life so you will remember it for the rest of your days. While these experiences don't appear too often, I believe they reside all around us, waiting for recognition. Last Sunday was such a day, a day when I did not only see the impact with my eyes. I saw it through the eyes of others. For those who attended, I saw it, <em>In Your Eyes</em>. </span><br />
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<span style="font-family: Verdana, sans-serif;">Last year's event was such a great time we committed to do it again. Donna and I started our preparation back in December and after the New Year, took off with a passion. We outlined our fundraising goal, spread the word across email and Facebook, gathered friends to join us, and eventually raised over $5000. We also supported Emma as she started up a new MDA club at her high school. The new club became an opportunity for students to get involved in something bigger than themselves and have some fun. The kids did a great job raising money through some unusual methods and built up great team spirit by making custom shirts for the event. </span><br />
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<span style="font-family: Verdana, sans-serif;">The day of the Muscle Walk was filled with some expected emotions and some unexpected ones. The expected ones were anticipation, a bit of nervousness, and joy. Anticipation encompassed us as we watched our fundraising grow right along with the list of walkers. Nervousness set in just days before as we realized that each walker would need to have their own waiver. Finally, joy encompassed us when we arrived at the event and began to see the smiling faces of everyone who came to support us. Some we expected to see while others were a welcome surprise. </span><br />
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<span style="font-family: Verdana, sans-serif;">The unexpected emotions came as the walk was to begin. For those who don’t know, Maddie was recently chosen as MDA’s Pennsylvania State Goodwill Ambassador for 2012. Her job is to support the activities of the MDA in our area, be a leading face to those active in the events, and to say thank you to all who donate their time and money to benefit kids and adults with Muscular Dystrophy. She has participated in a couple events so far, but the Muscle Walk has been the biggest to date, as she would have the honor of cutting the ribbon to start the walk.</span><br />
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<span style="font-family: Verdana, sans-serif;">As I stood on the opposite site of the ribbon to take Maddie’s photo, I noticed something I did not last year. Last year I was in the crowd, walking with our friends, and pretty much just taking in the experience. This time I had the unique opportunity to see the faces of everyone at once and I noticed something inspiring. As my camera lens zoomed in on Maddie preparing to cut the ribbon, I saw the true reasons for the day. I saw belief; I saw pride; and I saw love. The belief was in the eyes of the families who knew the money raised at this event would continue to help their own. I saw pride by those afflicted by muscular dystrophy as they prepared to show that despite some challenge, they too would “walk” today. Finally, I saw love in the eyes of every volunteer, friend, and coworker who were here not for themselves, but to openly show that they care about someone. It was in the eyes that I saw the spirit of the day.</span><br />
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<span style="font-family: Verdana, sans-serif;">My good friend Greg volunteered to take photos of the event so everyone would be able to remember who was there and what fun they had. He’s posted the photos up to the website <a href="http://www.gomdamusclewalk.com/">www.gomdamusclewalk.com</a>, so please click on the link and check them out. As you’ll see, he did an awesome job capturing the spirit of the day much better than I could with these few short words. To help along with capturing the spirit, we've also put together a short video below and at </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><a href="http://youtu.be/TZNNM6gS1eM">http://youtu.be/TZNNM6gS1eM</a> </span><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">which we hope you enjoy.</span><br />
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<span style="font-family: Verdana, sans-serif;">So, if you are in our area next year and want to join us for the Muscle Walk, you are most welcome. If you are not, visit the MDA site and look for a walk in your area. I can’t promise we will be able to join you in person, but we will be rooting you on from a distance. What I can promise is that you will leave the event with a smile on your face, joy in your heart, and a spirit that will live on…. </span><br />
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<span style="font-family: Verdana, sans-serif;"><em>In your eyes in your eyes</em></span><br />
<em><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In your eyes in your eyes</span></em><br />
<em><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">In your eyes in your eyes</span></em><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Keep Walking!</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Matt</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Credit to: Peter Gabriel, "In Your Eyes"</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The included video is having some trouble so please check it out on YouTube by clicking the following link: <a href="http://youtu.be/TZNNM6gS1eM">http://youtu.be/TZNNM6gS1eM</a>.</span></div>
<span style="font-family: Verdana, sans-serif;"></span>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1403927290529132193.post-58423883550395151832012-01-16T22:48:00.002-05:002012-01-16T22:48:40.718-05:00Walk This Way<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><i>She told me to<br />Walk this way!<br />Talk this way!<br />Walk this way!<br />Talk this way!</i><br /><br />For those of you too young to remember, long before Steven Tyler was sitting behind the desk on American Idol, he had a little band in the 70's named Aerosmith. Then one day in the 80's, while practicing their well known song, RUN DMC knocked down the wall and created a masterpiece. In case you haven't heard or seen it, click here: <a href="http://www.youtube.com/watch?v=4B_UYYPb-Gk&ob=av2e">Walk This Way</a> <br /><br />On February 26th, we plan to be filled with the same energy and spirit, participating in the MDA's second annual Muscle Walk at the King of Prussia Mall in Pennsylvania. Our team, Crowley Crusade, will be walking along with many other MDA families to raise research money for muscular dystrophy. <br /><br /> Last year, Crowley Crusade raised nearly $5000 for Pompe Disease research and this year our goal is to go even higher! Please sign up at <a href="http://www2.mda.org/goto/crowleycrusade">http://www2.mda.org/goto/crowleycrusade</a>, donate a few dollars, and walk a few laps with us to show support not only for our girls, but also for the many children in our area who battle each and every day against muscular dystrophy. <br /><br /> If you are unable to participate in person, please consider making a donation. Every penny makes a difference! You can donate by visiting our team's site at <a href="http://www2.mda.org/goto/crowleycrusade">http://www2.mda.org/goto/crowleycrusade</a>. If times are tough and you can't donate, please consider signing up just to walk or dropping a note of encouragement to our team. <br /><br />Perhaps for the first time ever, I can guarantee you will leave the mall richer than you entered. You will meet adults whose strength will impress you and children whose power will leave you inspired when they pass you by, look back and challenge you to...<br /><br /><i>WALK THIS WAY! </i><br /><br /> All for two and two for all! <br />Matt and Donna Crowley<br /><br />Credit to: Aerosmith and RUN DMC, "Walk This Way"<br /><br /></span><div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As you can see from the following photos, last year was a blast for everyone. The MDA promises this year will be even better! Mark your calendar and come join us!</span><div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Part of our team</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">A little team spirit!</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Dancing with the Zumba Girls</span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The big kids showing their support!</span></div>
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<span class="Apple-style-span" style="font-size: large;"> <span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Pompe Power Represent!</span></span></div>
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</div>Unknownnoreply@blogger.com0